Seeing Both Sides of the Opioid Debate

By Crystal Lindell, Columnist

I have suddenly found myself on both sides of the opioid issue.

I’m a chronic pain patient who is among the lucky few to have gotten better, or at least mostly better. And now, I’m so “lucky” that I get to take myself off opioids. It’s been hell.

I had this idea in my head that it would be like in the movies — 72 hours of feeling like death and then I would go on with my life. But it turns out even after your physical body adjusts to life without the drugs, your brain aches for them and begs you to take them.

I have it on good authority — a psychiatrist at a university hospital who specializes in this sort of thing — that I was never classically addicted to the morphine and hydrocodone that I took on a daily basis for my intercostal neuralgia. I never took more than the prescribed dose. I never took them to get that “high” that can come from the drugs. I never bought any off the streets.

I took them for pain. As prescribed. And I passed every stupid urine test they ever gave me. If they gave out grades for taking opioids correctly, I’m not saying I would definitely have an A+, I’m just saying I probably would. 

But when you’re on morphine 24 hours a day/ seven days a week for three years straight, your brain doesn’t much care why or how you took them, it just wants to know why the heck you stopped.

And so even after the initial diarrhea and the sweating and the body aches subsided, my brain was left in shambles. And I was hit with horrific, lingering crippling anxiety and insomnia.

It turns out there’s this thing called post-acute withdrawal syndrome, or PAWS. And first it should be noted that they really didn’t take things typically associated with puppies and use them to name ugly, terrible withdrawal-related issues. But whatever.

Anyway, as you go off certain drugs, like opioids, “Post-acute withdrawal occurs because your brain chemistry is gradually returning to normal. As your brain improves the levels of your brain chemicals fluctuate as they approach the new equilibrium causing post-acute withdrawal symptoms,” according to an article on Addictions and Recovery.org.

“Most people experience some post-acute withdrawal symptoms. Whereas in the acute stage of withdrawal every person is different, in post-acute withdrawal most people have the same symptoms.”

And the symptoms can last for two years.

Here’s is a list of symptoms from that article:

• Mood swings
• Anxiety
• Irritability
• Tiredness
• Variable energy
• Low enthusiasm
• Variable concentration
• Disturbed sleep

I have all of them, if you were wondering.

The anxiety and insomnia are a special kind of hell, because they don’t even let you escape with sleep for a few hours a day. You’re just awake, all the time, wondering if the world is actually going to end right then.

And you know in your mind that the anxiety isn’t logical. You know that just because the guy you’re seeing has read your text message but he hasn’t immediately responded to it doesn’t mean he’s met someone else and gotten married to her in the last seven minutes.

But anxiety doesn’t give an eff about logic. So your heart rate ramps up and you feel sick to your stomach and you convince that if he would just TEXT YOU BACK it would all be fine. And then he does, but it’s still not fine. Because it’s never fine.

Possibly most depressingly of all, I’m struggling to write. The anxiety convinces me that I have nothing important to say and nobody would want to read it anyway, and that anything I type has probably already been said better by someone else. It paralyzes me, and takes away the one thing in life I have always been able to count on. And getting this very column out has been an exercise in sheer will.

So yeah, it’s been awful. And most of the doctors I’ve been working with truly believe that since the drugs are technically out of my system and I wasn’t an “addict,” that I should be super awesome and totally good to go. Except I’m the completely opposite of that, and I’m really struggling with all this.

The worst part might be that dealing with withdrawal has so many ties to morality in our culture, so every time I have an anxiety attack and I reach for half a hydrocodone to calm me down, I feel like I failed at life. I feel like I went from A+ to F-.

The thing is, even with all this hell, I still don’t regret going on morphine three years ago. Back then I was in so much pain that I was genuinely planning ways to kill myself and the opioids were the only thing that helped me. They not only saved my life, they helped me keep my job and stay somewhat social.

But now, as I try to get my brain back to normal, I’m struggling. Like I mentioned, I’m working with a psychiatrist and psychologist and I have also recently made the decision to go on anxiety medication and try sleeping pills.

I still wake up in a state of panic more days than not though. I feel like something horrible is going to happen at any moment, and feel lucky if I get five hours of sleep in one night. So it’s not like I’ve found a magic cure.

The bottom line is it’s time we all admit how incredibly complicated opioids really are.

On one side, people in pain deserve access to them. Quality of life is important and nobody should have to suffer because of mass hysteria about hydrocodone. 

But we can’t ignore the fact that no matter how responsibly we take these drugs, our brains get addicted to them over time. And stopping them isn’t as easy as a 72-hour withdrawal weekend.

Doctors need to know these things, and then they need to relay them to their patients. And only when we have an honest conversation about the benefits AND the risks associated with these drugs can we begin to move forward in a productive way.

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

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

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

Making Everyday Life Less Painful

By Barby Ingle, Columnist

Every day is a challenge to remain independent when living with chronic pain. Normal activities such as walking, taking the stairs, squatting, sitting for long periods, and getting in and out of vehicles can be quite challenging and painful.

To get more out of life, I had to learn how to minimize disruptions in my daily routine and how to be a time and energy saver. That meant making some changes around the house.

Every pain patient and their family should assess their surroundings, perhaps with the help of professionals, and prioritize the modifications needed. This can help the patient maintain their independence and function.

Some of the lifestyle modifications you may wish to consider include: 

 Clothing

•  Flat shoes instead of heels for patients with lower extremity issues
•  Slip-on shoes
•  Velcro or zipper closures for shirts or sweaters
•  Velcro or zippers for shoes instead of shoelaces

 Bathroom

•  Elevated toilet seat
•  Grab bars in the bathtub, shower, and next to the toilet
•  Long-handled comb or brush so the patient does not have to raise his or her arm high
• Tub or shower bench 

Bedroom

• Blanket support frame so that blankets or sheets do not rest directly on the feet of a patient
• Nightlights in the bedroom and other rooms where the patient may walk if they awaken during the night

 Automobile

•  Car doors that are easy to open and close
•  Handicapped parking stickers
• Modified controls to facilitate driving
•  Seat positions that are easy to manipulate

Kitchen

• Easy grab handles for cabinets
• Large knobs on appliances requiring manipulation (stove, dishwasher, washing machine)
• Lightweight appliances (vacuum cleaner)
• Lightweight dishes and pots
•  Lightweight flatware with long handles
• Long handled cleaning appliances (brooms, dustpans, sponges)
• Long-handled "grabbers" for removing items on high shelves or picking up items from the floor
• Sliding shelves or turntables on kitchen shelves so the patient does not have to reach into cabinets to access items in the back 

Miscellaneous

• A note from your doctor recommending special accommodations, such as an aisle seat in airplanes
• Electric wheelchair to avoid upper body strain or injury
• Medical support professionals or accountants to budget medications, special appliances, home-nursing care, and other medical-related supplies and expenses
•  Nursing or home health care
• Use of wheelchairs in airports, train stations, or malls
• Voice activated lights, appliances, or computer
• Wheelchair-access modifications at home

Undoubtedly, there has been progress made in recent years by healthcare professionals and patients towards understanding and properly managing pain. Unfortunately, pain still poses a problem for patients who are under-diagnosed, over-diagnosed or misdiagnosed.

Controlling the pain you are in is essential to quality of life. Knowing the characteristics of pain and why it is happening give you an advantage in dealing and controlling aspects of pain. Taking control of your life and being responsible for yourself will assist you in lowering your pain.

I see these life changes as a way to improve my daily living -- not as defeats. Using tools in life help those with disabilities from pain have a better life. If a tool can help us accomplish more and increase independence, we should not be ashamed of using it.

Barby Ingle suffers from Reflex Sympathetic Dystrophy (RSD) and endometriosis. Barby is a chronic pain educator, patient advocate, and president of the International Pain Foundation. She is also a motivational speaker and best-selling author on pain topics.

More information about Barby can be found at her website.

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

Stop Attacking Chronic Pain Patients

By Jaymie Reed, Guest Columnist

Last week I had one of the most horrifying experiences ever. I was called and told to be in my new pain doctor’s office within 4 hours for a pill count.

You see, my own body is attacking itself, eating away the covering from the peripheral nerves in my arms and legs. I have Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) and it is very painful. I need opioid pain medication to treat that pain.

It was humiliating to sit in the doctor’s office waiting for my pills to be counted and my urine screened for the second time since I became a patient there. I felt my blood pressure rising and asked the nurse what it was. I was told it was 193/108.

Shakily, I asked, “What did I do wrong? Why did I have to come in here?”

The answer: “The DEA is breathing down our necks, so we have to do this!”

To myself I was thinking, “Why do I have to trade my dignity for healthcare so I don’t have to live in pain? Why are they making me feel worse and adding to my stress?” 

What ensued that day has prompted me to try and turn up the volume for chronic pain patients and what they have to deal with every month. Having to choose between pain, dignity or quality of life, such as being able to cook a meal, go to your child’s school event, or even making it to work, is a choice that none of us ever dreamed we’d have to make.

JAYMIE REED

The DEA, CDC, Congress and the lobbyists’ war against opioids has intimidated most all medical professionals to the point that many are choosing to avoid treating their patient’s pain because of the scrutiny they face. Just the additional record keeping the DEA requires for opioid prescribing makes it unprofitable, so some doctors simply jump ship and refer patients to the pill counting and urine screening protocol of a pain management specialist. The next stop after that is often an addiction recovery center.

Your own doctor should be the one person you can count on, but when we ask why and get the stock DEA answer, you feel lost. There has to be a better way because the war on opioids only adds an insurmountable amount of stress and worsens our pain levels, not to mention the added financial cost.

As the days go by, watching the war against opioids get nearly as much media coverage as Donald Trump, it’s become increasingly clear someone has an agenda. One possibility might be the lobbyists’ interests, which are often focused on increased funding for addiction treatment.

Will sending chronic pain patients to addiction centers be a solution or will it be responsible for a rise in the death toll? Any doctor will tell you a person in REAL pain won’t be helped by 30 days of counseling.  But, we are told the government requires it, all because of the witch hunt a few congressmen and lobbyists have created.

According to the CDC, the top 10 leading causes of death in the United States are

1. Heart disease: 614,348
2. Cancer: 591,699
3. Chronic lower respiratory diseases: 147,101
4. Accidents: 136,053
5. Stroke: 133,103
6. Alzheimer's disease: 93,541
7. Diabetes: 76,488
8. Influenza and pneumonia: 55,227
9. Nephritis (kidney disease): 48,146
10. Suicide: 42,773.

So the 18,893 overdose deaths in 2014 related to opioid pain medication don’t even make the top ten leading causes of death. Neither does the 10,574 overdose deaths related to heroin and other illegal drugs. Those numbers are concerning, but the real picture isn’t being painted.

Why do the mainstream media keep saying that opioids are a leading cause of death? Why are chronic pain patients made to feel like having an opioid prescription is equal to owning an assault rifle? No one in the media asks to hear from actual pain patients. And no one wants to know that thousands of chronically ill people like me are being treated like criminals by their own doctors.

The life of a chronic pain patient today is dreadfully frightening. Try visiting a pain management clinic and see if you could live your life that way. Searching the streets for drugs or finding a burial plot has never been a thought for me, but for some of us in pain they become an option when the only alternative is being treated like a prisoner in a recovery center. 

When the pain sets in with little or no medication, then the streets (if you can get there) or that burial plot start looking pretty good.  The news media needs to hear our voices and help end the attack on pain patients. 

Is anyone listening?

Jaymie Reed lives in Texas.

Pain News Network invites other readers to share their stories with us. 

Send them to:  editor@PainNewsNetwork.org.

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

How I Learned to Handle Chronic Pain

By Emily Ullrich, Columnist

It occurred to me the other day that I’ve come a long way since my initial chronic illness set in. It has been a rough journey, but overall, I feel myself to be “improved.”

I have more self-esteem. I am more positive emotionally and spiritually. And I am far better at handling my multitude of symptoms than I was.

I went through complete and utter Hell, but came out of it, and I think it is really important for people who are new to chronic pain and for those who are really struggling to know that it will get better.

Let me be clear. I am not saying, “Don’t worry, it’ll all straighten itself out and you’ll be back to your old self in no time.” I am absolutely not saying that. But, I am saying if you work, learn, and lean into it, it will get better—at least you will get better at handling it.

I think every so often it is important to assess yourself, your goals, your progress, your changes, your heart, where you are, and where you need to go. When you develop chronic pain, these goals and dreams have to be adjusted.

In 2011, I returned to the United States a shell of a woman. My overly ambitious goal to start a film school and a new life in Kenya had not worked out the way I had imagined. Worst of all, I kept getting sick, and finally I had to put my tail between my legs and go home to momma, in Kentucky.

I woke up on my very first morning back on American soil screaming in pain. I had a kidney stone. It was some kind of divine intervention that this pain held off over the 25 hour flight, and the days before I left Kenya, because there’s no way I could have handled it or found help.

EMILY UlLRICH

This was just the beginning of a slew of chronic illnesses, diagnoses, misdiagnoses, doctor and hospital visits -- so many that they flow into one another and overlap in my mind -- and an ambush of tumultuous emotions, all of which would be a nightmare for me and my poor mother, for the next three years or so.

From the time the kidney stone stirred a commotion in my body, the pain changed, and it never really went away. It became chronic pelvic pain, then fibromyalgia, migraines, and a flare up of malaria returned after I had one of many endometriosis surgeries.

At the time, I did not have health insurance, and in Kentucky, a single woman without children could not get Medicaid. The main suggestion for my condition was the Lupron shot, which cost $700 over the internet through a Canadian pharmacy, the only possible way I could afford it.

It would put me into early menopause, which I really did not want. The shot would only last six months, and then I would have to come up with another solution.

All of this was overwhelming. Worst of all, I had to see about 15 gynecologists and make endless ER visits with uncontrolled pain, before finally someone suggested a pelvic pain specialist to me. He was the first person to tell me that this was not normal. Most every doctor before him had told me it was normal to have some degree of “female pain.”

In the days and months that passed, I tried to hold onto my job as a professor in Cincinnati, which was not a short commute. I was put on so many different medications (hormones, steroids, tricyclic antidepressants, fibro medications, antidepressants, benzodiazepines, pain meds, NSAIDs, the list goes on) that I found out the hard way that I am allergic to a lot of them!

My own doctor told me to lie to the government and say I was pregnant, so I could get Medicaid, and then say I had a miscarriage and get the Lupron shot. He also told me it was time to stop working. I cried to him. I cried to my mother. I cried to myself.

Meanwhile, I was having so many different reactions from the medications, I would be up all night, muscles twitching, grinding my teeth, restless legs kicking out of control. Every day, I woke up expecting to feel better, only to be disappointed. I would be so tired I could sleep for days. My entire body and mind were highly agitated to the extreme.

I did not yet grasp the concept of chronic. I knew the word by definition, but had no idea what it meant as it applied to my life.

Now, after endless doctor visits and hospitalizations, I am doing better. I am not better physically, in fact I have FAR more problems and diagnoses than I did. But, I’ve become a medical research specialist, and have been lucky enough to be affiliated with numerous pain organizations, support and information groups. I’ve started speaking out and advocating, which gives me strength. I’ve married a kind, supportive, understanding, empathetic, and wonderful man.

I have a handful of doctors I trust, and one -- my pain doctor, who I’ve only been with for a few months -- is an absolute angel who actually cares about my pain.

I am a work in progress, but I know I am making progress, and that’s what counts.

Emily Ullrich suffers from Complex Regional Pain Syndrome (CRPS), Sphincter of Oddi Dysfunction, Carpal Tunnel Syndrome, endometriosis,  Interstitial Cystitis, migraines, fibromyalgia, osteoarthritis, anxiety, insomnia, bursitis, depression, multiple chemical sensitivity, and chronic pancreatitis

Emily is a writer, artist, filmmaker, and has even been an occasional stand-up comedian. She now focuses on patient advocacy for the International Pain Foundation, as she is able.

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.

Will CDC Opioid Guidelines Help Reduce Overdoses?

By Lynn Webster, MD, Guest Columnist

Politicians and some government officials tell us that the new CDC opioid guidelines will reduce deaths due to overdoses. But, based on the evidence we’ve seen so far, that is unlikely.

The latest CDC report shows a continual increase in opioid-related overdose deaths despite about a 25% decrease in the number of opioids prescribed.  This data demonstrates that an absolute reduction in opioid prescribing hasn’t resulted in the intended outcome – so far, at least. It may be counter-intuitive, but I think you’ll understand why in a moment.

The problem is more complex than the lawmakers, CDC, and regulators would have us believe. Simply reducing the amount of opioids prescribed will not necessarily affect overdose death rates as you might expect. In fact, it might do just the opposite.

What happens is that, when we reduce the amount of opioids that are prescribed, we force many of those with opioid addictions to switch to illegal opioids such as heroin and synthetic fentanyl, which are far more dangerous than prescription opioids.

If the amount of opioid prescribing were reduced dramatically, it would likely reduce the number of deaths from prescription opioids. But there would almost certainly be a significant increase in abuse of other drugs. That could result in more overdoses than we’re seeing now. We’ve already seen more deaths due to the increased use of heroin, but heroin is only one of many illegal drugs that can be abused.

Reducing the supply side of the addiction problem does not address the demand for opioids, nor does it help address the needs of people with the disease of addiction.

Of course, additional “collateral harm” can occur with people in pain who benefit from opioids, and it is unacceptable to any person with compassion. Denying prescriptions to people who have been benefiting from opioids is a misguided attempt to save the lives of people with opioid addictions at the expense of people with pain.

People with pain will suffer, and that suffering won’t save the lives of people with addictions who turn to illegal substances. Additionally, in all likelihood, we will see an increase in suicides from people who just cannot live with their level of pain.

There are about 104 suicides per day (compared to 44 opioid-related overdoses per day). In my opinion, intractable pain is a contributing factor in many of these suicides. I suspect that, as we see more and more people denied opioids for their pain, we will see an increase in the number of suicides. I base this on my experience of seeing many patients commit suicide in my practice despite having access to all of the available treatments.

Severe pain is not always compatible with choosing to live.

Reducing deaths related to over-prescribing opioids would be a good thing and must be a priority. But, if we want to reduce the amount of opioids prescribed for people in pain, then we must provide them another, safer way to handle their pain.

Trading opioid-related deaths for either death related to illegal drugs or to suicides because of pain, is not an acceptable solution. We need something better to offer people in pain, and we need it soon.

Lynn R. Webster, MD, is past President of the American Academy of Pain Medicine, Vice President of scientific affairs at PRA Health Sciences, and the author of “The Painful Truth.”

This column is republished with permission from Dr. Webster’s blog.

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 Flinch From Prescribing Pain Medications

By Forest Tennant, MD, Guest Columnist

By now chronic pain patients and practitioners are well aware of the new Center for Disease Control and Prevention (CDC) “Guidelines for Opioids for Chronic Pain” released on March 15, 2016. Although these guidelines have been, and will continue to be, strongly criticized for the process by which they were created, they are now published.

One of the often stated goals of CDC, despite widespread skepticism from many pain specialists, is that they did not want to limit access to pain care. Let’s take them at their word.

A major “bone of contention” regarding the guidelines is the recommendation that a daily dose of opioid should seldom go over 90 mg equivalents of morphine a day. In the CDC’s words:

“Clinicians should use caution when prescribing opioids at any dosage, should carefully reassess evidence of individual benefits and risks when increasing dosage to 50 morphine milligram equivalents (MME) or more per day, and should avoid increasing dosage to 90 MME or more per day or carefully justify a decision to titrate dosage to 90 MME or more per day.”

Thankfully, few chronic pain patients require more than 90 MME for pain management. Be alert, however, to the fact that 90 MME in the guidelines is not a maximum ceiling dose but a “trigger” or “call” for a medical-necessity evaluation, including a possible consultation or referral to a pain specialist.

My personal objection about all the new opioid prescribing guidelines, including CDC’s, is that they seem to want all patients on high-dose opioids to be managed by pain specialists rather than primary care physicians (PCPs).

Unfortunately we don’t have enough pain specialists to medically manage these legitimate, suffering patients who can’t function or leave the couch without an opioid dosage above 90 MME.

While the intent of the CDC to have the most serious pain patients managed strictly by pain specialists may be laudable, this won’t solve our nation’s epidemic of untreated and undertreated chronic pain. Incidentally, the new guidelines rightfully mention all the risks of high-dose opioids, such as addiction, diversion, and overdose; but they wrongfully fail to mention all the serious, life-shortening, and physiologic impairments that are the risks of undertreated, severe, chronic pain.

Sadly, without opioids, some of these unfortunate individuals will suffer immense physical dysfunction, endocrine failure (see Hormone Testing and Replacement), cardiovascular collapse, immune dysfunction, dementia, and premature death.

This memo is a plea to not discharge severe pain patients who are currently taking over 90 MME or avoid and deny patients who may need this level of opioid in the future. Be aware that the CDC guidelines do not prohibit dosages over 90 MME—what they rightly recommend is that physicians do an assessment and document medical necessity for dosages above that level.

Here are my personal practice policies and recommendations for dealing with past, current, and future patients who require over 90 MME:

The pain practitioner has to clearly state, in the patient’s chart, that the patient has severe chronic pain due to a specific underlying cause. For a patient to receive high-dosages of opioids, the physician must obtain and document the history, relevant physical exam, laboratory data, informed consent, and past records of treatments that have been tried.

Opioids should not be prescribed in isolation. Rather than just continuing to increase the dose, the physician needs to revisit what other modalities are being used or have been tried. These include: non-opioid medications such as an anticonvulsant if the pain has neuropathic elements, (being certain to titrate up to an effective dose); a topical medication such as Lidoderm patch, Voltaren gel, etc.; a physical therapist-guided home exercise program and other physical activities, including massage; consultation with an interventionist if appropriate; assessment and treatment of co-occurring anxiety or depression.

The new guidelines, in my opinion, could worsen a growing problem of access to medication. Already, in some locales, patients can’t obtain prescriptions and insurance companies don’t want to pay for opioids (or much else!!). If patients need a high, costly opioid dosage, they must personally determine the limits of their insurance coverage and identify pharmacies that will supply opioid medications.

We physicians can help but none of us has the time or influence to help every pain patient with his or her personal supply of medication and insurance issues. Simply stated, a patient must be an active rather than traditional, passive patient: pain patients must now join advocacy groups and begin to lobby for their right to obtain opioids and avoid an agonizing existence and premature death.

Millions of chronic pain patients now take opioids responsibly and constructively. While opioids aren’t for everybody, many pain patients who are taking high-dose opioids have enhanced their overall health, achieved a decent quality of life, and have likely extended their life span. These patients don’t abuse, divert, or overdose on their opioids, and they don’t develop hyperalgesia or the need to continually escalate their dosage. Isn’t it time we pay as much attention to these worthy folks as those who non-comply, abuse, and overdose?

Dr. Forest Tennant is pain management specialist in West Covina, California who has treated chronic pain patients for over 40 years. He has authored over 300 scientific articles and books, and is Editor Emeritus of Practical Pain Management.

This column is republished with permission by Practical Pain Management, which featured the opinions of several other practitioners on the CDC guidelines this month. You can see them all by clicking here.

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

Pain and Addiction Should Be Treated Separately

By Emily Ullrich, Columnist

Once again, the lack of humanity, honesty, and desire to provide quality pain care to patients on the part of doctors, hospitals, and medical and government organizations has astounded me.

Andrew Kolodny, MD, the founder and Executive Director of Physicians for Responsible Opioid Prescribing (PROP), whose name seems to be six degrees of separation from all movements to thwart proper pain care, has submitted a petition asking Medicare to stop requiring hospitals to survey patients about the quality of their pain management.

A group of U.S. senators has gone even further, introducing the PROP Act in Congress, which would prevent Medicare by law from making "any assessments" of pain in hospitalized patients.

As I and others have written, pain is not merely discomfort. It is unhealthy and can even be life-threatening. If a patient is left in severe, unattended pain during a hospital stay, their acute pain can become chronic, triggering a host of other medical problems, such as high blood pressure, impaired immune function, ulcers, rashes, anxiety and depression. So, reporting one’s pain care while hospitalized is essential to the outcome of healing.

But, according to Kolodny and others who signed his petition, asking patients about their pain care leads to “dangerous pain control practices” and “aggressive opioid use.”

My question is, since patient surveys have contained pain evaluating questions for years, where is the evidence that doctors have over-medicated patients so their hospitals will have satisfactory survey ratings?

My guess is there is none. I have been hospitalized and suffered untreated or undertreated pain many times. I not only filled out surveys, but called hospital administrators, wrote the Joint Commission for hospital accreditation, and more, and STILL received sub-par pain care from doctors.

I am not alone. A recent survey of over 1,200 patients by Pain News Network and the International Pain Foundation found that over half rated the quality of their pain care in hospitals as either poor or very poor.

My next question is why doesn’t Kolodny want people to know about our pain? I suspect I know the answer.

As mentioned earlier, Kolodny can be traced back to nearly every movement to intervene in the proper medication of pain patients. In addition to running PROP, he is chief medical officer for the addiction treatment chain Phoenix House, and seemingly has an elaborate plan to have every patient on opioids be treated as an “addict.”  

This brings me to one final question. Why doesn’t any major American media outlet look into the conspicuous ulterior motives of Kolodny, PROP and Phoenix House? I am not much on conspiracy theories, but at this point I am compelled to say there might be something there, but our government and society are already so brainwashed to associate pain with addiction that no media outlet will touch it. Not to mention the political funding and special interest groups that also have a stake in this.

It all boils down to money. Healthcare in this country is treating pain on a financial hierarchy. The Obama administration has bought into the CDC guidelines on opioid prescribing, and the passing of the PROP Act will only further the notion that pain and addiction are one in the same.

Despite what we are being told, pain and addiction are two different issues, which need to be addressed separately. If this havoc wreaking discrimination continues, there will be no such thing as pain care left in this country.

Emily Ullrich suffers from Complex Regional Pain Syndrome (CRPS), Sphincter of Oddi Dysfunction, Carpal Tunnel Syndrome, Endometriosis,  Interstitial Cystitis, migraines, fibromyalgia, osteoarthritis, anxiety, insomnia, bursitis, depression, multiple chemical sensitivity, and chronic pancreatitis

Emily is a writer, artist, filmmaker, and has even been an occasional stand-up comedian. She now focuses on patient advocacy for the International Pain Foundation, as she is able.

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 Mindfulness and a Positive Attitude

By Barby Ingle, Columnist

Mental health can be disrupted when living with chronic pain. Anxiety, depression, isolation, and feelings of hopelessness and helplessness can increase to dangerous levels. Life can become overwhelming -- particularly for people who have been suffering with chronic pain for a long period of time. The idea of living with this horrible disease with no cure is astounding.

When my chronic pain started doctors often told me, “Just do this and you will be okay.” I would build up my hopes and follow their directions. But when I did not get better, I came crashing down and so did life around me.

When I finally realized there was no cure for my chronic pain and that my future would include pain on a daily basis, I began to have dark thoughts. I went through a grieving process in the course of coming to grips with my new reality. It is hard for many pain sufferers to accept their changing life, and the loss of independence and function.

It is very important for you and your family to recognize the symptoms of diminished emotional well-being and take action or you may end up at risk of suicide. There are going to be good and bad days, and if this is a bad day for you, remember to focus on the good days, good feelings and positive past and future experiences.

It was when I began looking for solutions, and displayed a positive attitude, self-esteem and confidence, that I began to attract other people who wanted to help me accomplish my needs and goals. Be sure to surround yourself with a team that is on your side, or you will be in a fight in which you will have trouble winning.

Creating a positive attitude starts with being inspired. You can begin by finding new interests and hobbies you can enjoy. A few suggestions are joining a non-profit cause, solving puzzles, writing a journal, joining or starting a support group, or even starting a blog. Creating a purpose can assist with your self-esteem and confidence.

I have learned that every person has a value no matter how big or small they seem. Believing in yourself and in your abilities, choosing happiness and thinking creatively is good motivation when it comes to accomplishing your goals. Learn to expect success when you are going through your daily activities. It might take you longer or you may need to use more constructive thinking to achieve success, but it is possible. 

There are great benefits to having a positive attitude, especially when things are not going your way. Staying optimistic will give you more energy, happiness and lower your pain levels. Success is achieved faster and more easily through positive thinking, and it will inspire and motivate you and others. I have found that when I am letting the pain get the better of me, it comes across to others as disrespect and brings those around me down.

No matter the challenges of today, they will pass, and will not seem as bad as time moves on. Challenges often turn out to be a bump that looked like a mountain at the time. You can be mentally positive and happy even when there are large obstacles to overcome.

No person or thing can make you happy and positive. Choosing to be happy starts with mindfulness.  

You can learn about mindfulness and moving beyond psychological suffering in a free two-part webinar I’ll be hosting, featuring Dr. Melissa Geraghty on April 28 and Dr. Karen Cassiday on May 13.  You can register for the webinars and learn more about treatments for anxiety and depression by clicking here.

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

Pain Companion: When Pain Hijacks Your Brain

By Sarah Anne Shockley, Columnist

I had a great inspiration for this article a couple of weeks ago and immediately forgot what it was. I exhausted myself, uselessly racking my brain for the idea I’d had. What was it I thought was so perfect to write for Pain News Network?

Several days went by with me trying to find the elusive idea. I couldn’t even figure out what it related to. It was as if it had completely left the universe and was utterly irretrievable. Gone without a trace.

Ever feel like that?

Studies have shown that chronic pain affects the brain, but most of us living with chronic pain don’t need researchers to tell us that. We live with brains that don’t seem to be firing on all cylinders every day. I don’t know if there is an official term for it, so I’m just calling it “Pain Brain.”

In this and my next column, I’ll discuss some of the ways in which Pain Brain affects our ability to cogitate -- and some practical ways I’ve found to live with it a little more gracefully and even to coax the brain back online.

Dealing with Blank Spaces        

Do you find yourself in the middle of a sentence and can’t remember what you were talking about? Sometimes can’t come up with the words for even the most common items like chair, book, pen? 

We worry that we might be getting Alzheimer’s and sometimes find ourselves very embarrassed when, in the midst of telling someone something important, our brains simply turn off.

We’re left with our mouths hanging open in mid-sentence, whatever we were just talking about an utter mystery to us. We draw a complete blank. Sometimes it’s just a word, but often it’s the whole concept. Just gone. This can be extremely disconcerting.                                    

I find, particularly when I’m tired, that I’m creating sentences with a whole lot of blank spaces in them. “Can you hand me the... the... the... the... you know, I mean, uh... the… the... the.....” You’ve probably done this too.            

Stop. Breathe. Relax. Laugh. Choose another word. Or just let it go and carry on without that word or even that idea. It’s not that your brain is dying, you’re in pain.            

I’ve found that it’s usually not all that helpful to exert a lot of energy to try and recapture the word I lost. I’ve found that my efforts usually don’t make a bit of difference. I can’t conjure up that exact word or thought no matter how hard I try - and I just wear myself out and get flustered.                   

Pushing your brain to get back into gear creates tension, and you don’t need any more of that. Trying to find the exact word leaves a longer silence in your conversation, and you get the deer-in-the-headlights look, and that’s when you begin to feel uncomfortable and embarrassed. You want to say, I’m not really stupid or senile or easily distracted, I used to be able to converse with the best of them!                   

Instead, just move on with the conversation. Usually, sooner or later, the words you need pop back in. Sometimes much later. Sometimes in the middle of the night. But that’s okay. If we can just be easy with it, it’s not that big of a deal. It’s usually more disconcerting for us than the person we’re talking with.

Dealing with Brain Freeze

There are times, however, when it’s more than a particular word that’s missing. For me, it’s often a total brain freeze. Everything comes to a screeching halt, usually in mid-sentence. I have no idea what I was just saying, what the topic of the conversation was, or what direction I was headed in.                  

It’s pretty strange, because you don’t lose the power of speech, you just have no idea what you’re talking about anymore. It’s like the part of your brain dealing with that specific subject goes on a coffee break in the middle of a sentence, leaving you kind of stunned by its complete lack of presence.

For friends and family members, you can make up a code word or phrase for when you’re feeling disconnected from your own brain. I often just say, Sorry, my brain just stopped. It’s short and to the point, and they’ve learned what it means. They either remind me of what we were talking about, or we move onto something else.                   

For other people who don’t know your situation, and if you find yourself embarrassed by your own stupefaction, you might try just changing the topic. It’s really strange, but the brain seems to be able to go somewhere else and work relatively well, just not where you wanted it to go at the moment.

You can also distract other people’s attention from your sudden silence by asking them a direct question such as, What were you saying a moment ago? Or simply, What do you think? If they have something they have to respond to, it usually diverts their attention from your blank stare.

If you refer to what they were saying indirectly, without having to remember exactly what it was they actually said, they will often fill in the blanks for you and help you back on track -- without you having to explain that your brain just stopped.

Living with Pain Brain can be challenging, but in my experience, those of us who struggle with it notice the blank spaces and lost words much more than anyone we’re conversing with.    

In my next column, we’ll talk about memory loss and lowered capacity to cogitate. I’ll have some suggestions for working with them as well.                                

Sarah Anne Shockley suffers from Thoracic Outlet Syndrome, a painful condition that affects the nerves and arteries in the upper chest. Sarah is the author of The Pain Companion: Everyday Wisdom for Living With and Moving Beyond Chronic Pain.

 Sarah also writes for her blog, The Pain Companion.

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

Maddening Advice: When the Dots Don’t Connect

By Pat Akerberg, Columnist

If I didn’t have a neurological pain disorder that defies resolution, I would scream out loud in frustration.  But talking and screaming are huge pain triggers, so I avoid them. 

You might be thinking that I want to scream because of the hundreds of horrific electrical pain spikes I endure all over my skull every day.  But that’s not actually why -- uninvited and uninformed advice are what makes me want to scream!

Not a day goes by that I don’t read some comment, hear of some off-the-mark advice offered, or field some intrusive advice myself.  You know the kind. 

It’s advice that’s given as if it holds the illumination of the brightest sage on the planet; and ought to be surrounded by a glowing halo.  Forget that it doesn’t fit the whole picture – the complexity of my medical disorder, pain, history or my own experience.

Oftentimes the suggestions and advice come in the form of simplistic, sweeping generalizations, with a hint of judgment laced with a black and white attitude.  If it worked for my aunt, then it will work for you – an improbable dot.

Sometimes it even comes with a hurled platitude or two for extra measure.

My personal non-favorite is the one that implies that we’re not given more than we can handle. The implication being that we just handle it then. 

“Just” is another pesky diminishing, misguided dot.

What if the reality is that some days we can and others we can’t, hard as we try?  Sometimes the right action in response to Yoda’s, “there’s no try, only do” is to not do.  

And I marvel at the pull yourself up by your bootstraps, take charge, buck up, get happy, and do something to help yourself variety of advice. Chances are some version of that is usually offered by someone who either never has or only temporarily had to live with pain, and not of the disabling kind. It’s the kind of “tough love” pep talk more fitting for enablers to deliver to an addict. 

But we’re not addicts; nor are we malingerers. 

These one-way, one-size-fits-all approaches are not motivational, considerate, or even pertinent in most situations. 

Is it so hard to believe that there are various physical activities, like exercise, cardio, yoga, bike riding, etc.,  that are simply too demanding to bear for some people with debilitating illnesses?

Contrary to the no-pain, no-gain notion, sometimes those very activities actually thwart improvement. I can personally attest to experiencing those setbacks, causing me to regretfully cancel my Y-membership.

To some, that translates to I am not trying hard enough and don’t want wellness bad enough.  Or that I am weak, succumbing to defeat. I can’t imagine anyone thinking that a person would prefer to live an impaired life voluntarily.  If I could get back to work, I’d be out the door in a heartbeat.

What if instead I know my own body, limitations, and my history better than someone else does?  What if I’ve learned from a disastrous, damaging brain surgery how to pay keen attention to my gut instincts about potential harm?

A friend of mine calls that honing skill his “Spidey” sense.  The best part is that you don’t have to be a super hero to have it either.  I suspect a few of us have developed it the hard way.

Growth and development comes in many forms -- not always external in nature.  Though we may not be exercising or running; there’s plenty of internal growth going on in will, courage and fortitude.

It’s how we carry on. 

Then there are the obvious suggestions that test anemic up against the unrelenting pain wallops that resist much of what’s out there to abate them. 

It might surprise some advice givers to learn that serious chronic pain sufferers laugh silly at the notion that Tylenol, Advil, a good vitamin complex, bottled water (yes, I was offered that one), a certain diet, or doing _______(fill in the blank) will relieve our pain. 

You’ve probably heard others just as ill-fitting or absurd.  None of those dots that plop can stop the neuropathic pain strikes relayed through my faulty central nervous system.

Once I heard a man tell other pain sufferers that they could not have possibly tried all of the potential pain treatment options out there, that no one could in their lifetime. 

Some sufferers have researched and lived with their chronic conditions for years, have seen dozens of specialists in multiple states, had multiple surgical procedures, and/or have taken an untold morass of medications – all factors the advice giver couldn’t have known or considered.

I do realize that sometimes people, even well intentioned, just don’t know what to say to someone who is suffering endlessly. 

But there’s actually no requirement that advice or suggestions be given, is there?  Support, the kind that connects, can be conveyed in so many practical, helpful ways based on the person’s actual needs.

Often self and other awareness can go a long way during difficult circumstances. I mean the pause of “until you’ve walked a mile in my shoes” kind of other awareness.  And the restraint of “err on the side of doing no harm” self awareness if you aren’t sure.   

People in pain are often misunderstood, maligned, barely listened to, or believed.  One of the greatest gifts someone can give to a chronic pain sufferer is their supportive presence.  A caring friend or family member simply willing to listen is balm for the spirit.

In the end, self care trumps unsolicited, disconnected advice.  Apparently today that involves tuning my Spidey advice radar up yet another notch.

Along with that comes the personal responsibility to do my best not to inflict the same unwanted practice on others.

Pat Akerberg lives in Florida. Pat is a member of the TNA Facial Pain Association and serves as a moderator for their online support forum. She is also a supporter of the Trigeminal Neuralgia Research Foundation.

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

Pain Pacifist: A Poem About Pain

"Pain Pacifist"

By Angelika Byczkowski

Pain warrior no longer,

I surrender,

give up the fight,

become a pacifist.

Pain is far too big,

too strong for me

to stand against,

curb or contain.

It spills over

the edge of my meds,

trampling barriers

of mind eroded

by long-sustained

assault, it gives

no pause, no rest,

no redemption.

I'm worn down,

too exhausted

to continue this

unending battle,

fighting my own

invisible torment,

running wild in

this broken body.

Dreams for the future

lie shattered, love

of life destroyed,

lost to pain, and

the way ahead

looks even worse,

I change my route,

try something new.

I declare a truce,

one-sided, still

it brings me moments

of gentle calm,

when a window

opens briefly,

gives me a glimpse

of possible peace.

Angelika Byczkowski suffers from Ehlers-Danlos Syndrome and fibromyalgia. Until she was disabled by progressive pain and fatigue, Angelika was a high tech IT maven at Apple and Yahoo. She lives in California’s Santa Cruz Mountains with her husband and various 4-legged kids.

When pain isn't keeping her flat on her back, she spends her limited energy researching and blogging about chronic pain, EDS, and fibromyalgia at EDS Info.

Pain News Network invites other readers to share their stories (and poems) with us. 

Send them to:  editor@PainNewsNetwork.org. 

Pain and Parenting

By Barby Ingle, Columnist

A little over a year ago my brother and I published a book for children who have people in their life living with chronic pain. We both live in pain and he has children.

In preparing the book we did a lot of research on the language that children understand. For instance, using the word “hurt” instead of “pain” for children under six years of age helps them better comprehend chronic pain. Saying “Aunt Barby hurts” works better than “Aunt Barby has a migraine.”

When speaking with your child about chronic pain, try to create an open dialog that is age appropriate. Children need to be reassured about what is happening, especially when the child is the patient. For school-aged children, keep their teachers and counselors involved and offer them additional counseling and resources.

Young children have very active imaginations and when left to their own thoughts can make a situation much worse. I remember a time when I was young and a friend in school passed away. I had a cold the week before and went to school anyway. The teacher explained to the class that Chris had passed away after getting sick. For years afterward I thought I made him sick and that is why he died.

School-aged children think in black and white terms, so give realistic and honest answers like: “I don’t know when Christy will get better, but we can help make it easier for her if we do this.” 

Dealing with an adolescent child is a roller coaster for many parents and chronic pain makes that roller coaster ride even scarier. Many patients who are diagnosed in their teenage or early adult years will stop or slow development mentally and emotionally unless they are guided in managing their pain properly. They need understanding, support and encouragement from others, and to be engaged in social activities as much as possible.

It is best to answer their questions honestly and treat them with the ability to understand.  Get them professional help if they are acting out or asking questions you feel will be better answered by someone qualified in chronic pain and psychology.  

A big part of parenting and interacting with younger people with pain is our own guilt about their limitations. Instead of beating ourselves up, read them a bedtime story, watch a movie, or just spend time together. You may be surprised how proud your child is of how you are handling such a difficult situation as their caregiver. 

For parents in pain, the birth of a child is a wonderful and joyful event, but it raises a whole new set of concerns. For those who develop a pain condition after their child is used to life with fewer limitations and restrictions, this can bring on even more challenges and adjustments.

Some important questions to ask yourself are what if the pain grows worse? How will my child understand? How can I still parent them appropriately? And is there a difference if it’s mom or dad in pain? 

Have an open dialogue and communication that helps your children, grandchildren, nephews and nieces understand limitations and why a family member or parent is different. Children need to know they cannot catch your pain!

Children function better with a routine and knowing how things will get done – as in how they get to school or who will make their lunch. Make plans and stay organized. Get the family involved so that they know it will all be okay if mom or dad can’t manage things that day. Children of all ages need to be reassured about what is happening and that it will all work itself out. By planning, preparing, and helping, you can make it go that much smoother for the whole family.  

The bigger part of parenting with pain is our own guilt that we are short changing them somehow because of our limitations. With my older nephews, I didn’t have as close of a relationship with them for years due to not being able to manage expectations. Once I was able to set the expectation, it helped tremendously.

Yes, we may have to do things differently and maybe a few less things, but pick what matters and make it count.

And check out "Aunt Barby’s Invisible, Endless Owie" by Tim Ingle and Barby Ingle.

Barby Ingle suffers from Reflex Sympathetic Dystrophy (RSD) and endometriosis. Barby is a chronic pain educator, patient advocate, and president of the International Pain Foundation. She is also a motivational speaker and best-selling author on pain topics.

More information about Barby can be found at her website.

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

The Advantages of Having a Service Dog

By Ellen Lenox Smith, Columnist

I chose to apply for a service dog after meeting someone else with Ehlers Danlos syndrome (EDS) who had been given one by the National Education for Assistance Dog Services (NEADS), also known as Dogs for Deaf and Disabled Americans.

At first, I was nervous that I would not be able to handle the responsibility, afford the cost, and that I would not qualify for a service dog. But the decision to apply and later bring “Maggie” into our lives was one of the best I’ve ever made.

Six days after coming home from a two week training program, Maggie saved my life. To this day, she senses when I have my breathing cut off and alerts me.

Maggie can somehow tell in the morning that I am headed for a bad night. She will look me in the eyes, nudge against me, lick my legs and not leave me alone. She was not trained to know this, but we somehow bonded so well in the first few weeks that she can sense when my oxygen levels are too low.

At night when she senses this, Maggie wakes me -- first by pacing on the bed, then whining, and if that does not work, she licks or nudges me until I awake.

I met Maggie when I was barely able to walk. She quickly helped me learn to live life in a wheelchair.

Imagine what it is like to drop an object and not be able to get down and pick it up. Maggie will pick up whatever she finds on the ground and bring it to me. She can retrieve the phone and pick up paper, pens, and almost any size object. She can even be sound asleep and hear me drop something and come right over to get it for me.

I also find her support with balance. Although NEADS does not train dogs to wear harnesses for balance, they do help you to utilize the dog for simple tasks, like getting up safely from a chair, out of a car and even off the toilet seat.

Maggie provides amazing pain relief and comfort, too. The heat from her body when she spoons against me, provides soothing comfort that goes way beyond any medication. To have her by my side helps me to gain confidence with my constantly slipping body.

I am always loved, cared for and never alone. As a service dog, Maggie can be by my side wherever I go -- whether it is the hospital, airport, train, pool, store, car, hotel, restaurant, and even the White House. She is welcome all places except a military base or private home. Those are the only places I must get permission for her to be with me.

Caring for Your Service Dog

I was concerned that I would not be able to care for my dog. But NEADS will train you to learn how to take care of the dog you are matched with no matter what your physical challenges might me. Do not stress about that - they will guide you and your dog through the process.

You will be taught how to care for the dog, how to feed, groom and exercise them, despite your obstacles.

Can You Afford a Service Dog?

An average NEADS dog costs over $42,000, but they only ask clients to raise a minimum of $8,000. I was so concerned I would never be able to raise the money for my dog, but NEADS put my mind at ease, explaining that they set up an online fundraising page for you to send out that tells your story and asks for support.

I sent the link to friends and also posted the story in local stores. In three months, all the money for Maggie was donated by people, many of whom I didn’t even know. Do not stress about the cost. NEADS will work that out if you qualify for a dog. They just ask that you help them defer the cost.

To apply for a dog, go to the NEADS website, fill out the application and then expect a call for an interview. Always feel free to contact their office to be sure the request has come through and to get an update on the status of your application.

I always encourage those that are considering a service dog to go ahead and apply, even if they have reservations, to get on the waiting list. The worst that can happen if you change your mind is that someone else gets the dog selected for you.

The wait can take from a few weeks to up to a year and a half. So why not get in line?

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

For more information about medical marijuana, visit their website.

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

How Opioid Prescribing Guidelines Use Pseudoscience

By Michael Schatman and Jeffrey Fudin, Guest Columnists

Recently, we (along with our colleague, Dr. Jacqueline Pratt Cleary) published an open access article in the Journal of Pain Research, entitled “The MEDD Myth: The Impact of Pseudoscience on Pain Research and Prescribing Guideline Development.”

In this work, we address the issue of how governmental and managed care opioid guideline prescribing committees use the flawed concept of morphine-equivalent daily dose (MEDD or MME) to arbitrarily place limits on the amount of opioids that a clinician “should” prescribe to any patient with chronic pain -- as if all patients were identical. 

The article cites excellent research that exposes the invalid concept of MEDD – and while guideline authors are fully aware of that lack of evidence, they are hypocritically fine with using MEDD as a device to thwart chronic opioid use. In the case of opioids for chronic non-cancer pain, there is at least some evidence.  But for MEDD, there is no evidence.   

One reason the MEDD concept is not legitimate is pharmacogenomic differences – that is, due to each of our unique genetic compositions, various individuals and geographical groups metabolize some opioid analgesics differently.  These differences are often enormous. 

For example, it may require Person “A” 20 milligrams of hydrocodone to achieve adequate pain relief, while Person “B” (of the same gender and weight) may require 60 milligrams of the same drug for the same type of chronic pain condition.  Does this make Person “B” an addict?  Of course not.

We believe that by arbitrarily limiting the “appropriate” amount of an opioid that a physician should prescribe to a patient (which all recent guidelines – including the CDC’s guideline – call for), physicians feel compelled to limit the amount of opioid analgesic therapy that they prescribe – irrespective of the amount of relief that a patient with chronic pain receives. 

Is this good pain medicine practice?  Hardly.  However, in the eyes of the anti-opioid zealots who have dominated recent opioid prescribing guideline committees, their agenda of taking opioids out of the picture altogether for patients with chronic pain is evidently more important than is patient well-being.

Aside from the pharmacogentic issues, we also have conversion issues because of simple mathematics.  We cite data that clearly shows there are no universally accepted opioid equivalents.  Even if there were no issues with genetic variability, there is still no consensus on how to mathematically convert one opioid to another. For example, the state of Washington may decide on a different MEDD equivalent than the one New York state chooses.

Will the anti-opioid zealots admit that they have a non-scientifically-based agenda to take opioids out of the American chronic pain management discussion?  No – because if they were to do so, they would be seen as cruel or uncaring.  Rather, they emphasize that their concerns are for the well-being of patients and society.  Their logic suggests that if clinicians stop prescribing opioid analgesics altogether, then the unfortunate number of opioid-related overdoses and deaths will decrease dramatically. 

Not surprisingly, they lack the data that supports this assertion, yet the data are clear that when this happens, heroin use increases proportionally. 

As scientists and practitioners who work with patients with chronic pain every day, we see the damage in which these guidelines result.  For example, while the guidelines are described as “voluntary” by the committees that write them, that is clearly not the case.  Although the zealots deny the existence of a chilling effect on prescribing, there are data that suggest that progressively fewer physicians are willing to prescribe opioids since these non-evidence-based guidelines have surfaced.  Despite being touted as voluntary, physicians fear regulatory sanction should they disobey them, and accordingly are taking opioids out of their treatment armamentaria. 

Are we suggesting that opioid therapy be considered the first-line treatment for chronic pain?  Certainly not.  Chronic opioid therapy should be considered only when other available treatments have proven ineffective. However, given the for-profit health insurance industry’s business ethic of cost-containment and profitability, insurance access to many treatments that may be superior to opioid therapy are out of reach for the vast majority of Americans. We also have to remember that 20% of Americans live in underserved areas in which more sophisticated and safer treatment options are completely inaccessible.

We are concerned about this ethical imbroglio, as it is extremely damaging to our patients who suffer from the disease of chronic pain.  To quote from our article, opioid prescribing guideline committees’ continued utilization of the antiquated and invalid concept of MEDD is “scientifically, ethically, and morally inexplicable.”

As a result of this highly unethical practice, “impressionist lawmakers and anti-opioid zealots are basing clinical policy decisions on flawed concepts that ultimately could adversely affect positive outcomes for legitimate pain patients.”

It’s difficult enough to suffer from chronic pain under the best circumstances.  What patients with pain and society in general certainly don’t need is a group of smug inexperienced pain policymakers, politicians, and managed care administrators impacting public policy by evoking pseudoscience. There is sufficient good science being published that demonstrates that their reliance upon the MEDD myth is highly disingenuous.

Michael E. Schatman, PhD, is a clinical psychologist who has spent the past 30 years working in multidisciplinary chronic pain management. Until recently, he served as the Executive Director of the Foundation for Ethics in Pain Care in Bellevue, WA.

Dr. Schatman is Editor-in-Chief of the Journal of Pain Research and Director of Research for the U.S. Pain Foundation.

Jeffrey Fudin, PharmD, is a Clinical Pharmacy Specialist and Director at the Pharmacy Pain Residency Programs at the Stratton Veterans Administration Medical Center in Albany, NY.  

Dr. Fudin is Diplomate to the American Academy of Pain Management and a Fellow of both the American College of Clinical Pharmacy and the American Society of Health-system Pharmacists. 

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.

A Pained Life: The Good and Bad about CDC Guidelines

By Carol Levy, Columnist

The Centers for Disease Control and Prevention begins the summary of its new opioid guidelines by stating: “This guideline provides recommendations for primary care providers who are prescribing opioids for chronic pain outside of active cancer treatment, palliative care, and end-of-life care.”

I have issue with some of the guidelines. Other parts I think are common sense, although I know many will disagree with me.

That being said, the guidelines negate themselves when they state they are not aimed at those receiving palliative care, which is described as: “Palliative care is specialized medical care for people with serious illnesses. It focuses on providing patients with relief from the symptoms and stress of a serious illness. The goal is to improve quality of life for both the patient and the family.”

That definition clearly includes those with chronic pain illnesses and disorders. As such it does not make sense to go after us as the main culprits of the alleged opioid epidemic.  I write alleged because there seems to be much controversy whether the epidemic exists, its cause, and the medications involved, some of which are either gotten illegally or are themselves illegal, such as heroin.

These are the guidelines:

1) Non-pharmacologic therapy and non-opioid medication are preferred for chronic pain. If opioids are used, they should be combined with non-opioid drugs and therapy as appropriate.

2) Before starting opioids for chronic pain, clinicians should establish treatment goals, including realistic goals for pain and function, and consider how opioid therapy will be discontinued if benefits do not outweigh risks.

3) Before starting and periodically during opioid therapy, clinicians should discuss known risks and realistic benefits of opioid therapy.

4) When starting opioid therapy for chronic pain, clinicians should prescribe immediate-release opioids instead of extended-release/long-acting opioids.

5) When opioids are started, clinicians should prescribe the lowest effective dosage.

6) Long-term opioid use often begins with treatment of acute pain. Clinicians should prescribe the lowest effective dose of immediate-release opioids and no greater quantity than needed for the expected duration of severe pain. Three days or less will often be sufficient; more than seven days will rarely be needed.

7) Clinicians should evaluate benefits and harms within 1 to 4 weeks of starting opioids or dose escalation, and should evaluate benefits and harms every 3 months. If harm outweighs benefits clinician should work with patients to taper opioids to lower dosages or discontinue.

8) Before starting and periodically during continuation of opioid therapy, clinicians should evaluate risk factors for opioid-related harms.

9) Clinicians should review the patient’s history of controlled substance prescriptions.

10) When prescribing opioids for chronic pain, clinicians should use urine drug testing before starting opioid therapy and consider urine drug testing at least annually.

11) Clinicians should avoid prescribing opioid pain medication and benzodiazepines concurrently.

12) Clinicians should offer or arrange evidence-based treatment.

Most of these guidelines seem to be to be based on common sense; however I take great umbrage at the recommendation about urine drug testing. I do not know of any other patient group where a patient is presumed guilty or felonious. It casts cast a black mark on every person who has a chronic pain disorder and for whom opiates are prescribed.

The guidelines also miss the mark by not differentiating between patients for whom physical and alternative therapies can help and those they cannot. For instance, trigeminal neuralgia and other cranial neuropathies will get no benefit whatsoever from those kinds of therapies. Lupus, multiple sclerosis, chronic regional pain syndrome (CRPS/RSD), and many other conditions are also not responsive or greatly responsive to physical therapy, targeted injections and other types of nonopiod therapies.

Suggesting other forms of therapy for a population that is not helped by them is not palliative, in any sense of the word.

However, I think we hurt ourselves when we jump on a bandwagon and say the whole idea of guidelines are hurtful to our community. We need to look at them clearly.

It should be pro forma that the doctor talk to his patient about the harms and benefits of any prescribed treatment. It should be standard practice for a doctor to evaluate if the treatment is helping or not, and make any necessary changes.

It is only logical that the medical community treat the chronic pain community as they would any other; with professionalism, common sense, decency, and thoughtful help.

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.