CDC Reports on Opioids Appear Biased

By Lynn Webster, MD, Guest Columnist

Like most people, I respect the opinion of the Centers for Disease Control and Prevention (CDC). It is our first and last line of defense against everything from chronic disease to full-fledged pandemics. That said, I am perplexed why the CDC would sound an alarm, while at the same time acknowledging that the fire doesn’t actually exist.

That’s more or less what the CDC did in a report finding that approximately a quarter of privately insured and a third of Medicaid-enrolled women of reproductive age (15-44 years) filled a prescription for an opioid each year from 2008 to 2012. The report went on to say that the trend of opioid prescriptions among childbearing women places unborn children at risk for birth defects. On this point, the report does not address how many of the women actually became pregnant and otherwise has a glaring absence of empirical data to support its claims.

If you are a clinician or scientist, the CDC report appears incomplete and biased against people in pain. If you are a patient or consumer of the news, the report is alarming. Neither of these outcomes advances medicine, nor do they help people who abuse prescription medication or those who experience chronic pain.

Without question, opioids must be replaced as a primary method of pain treatment in favor of safer and more effective therapies. It is clear that in many instances, the risks of opioid therapy far outweigh the benefits. However, many patients with pain have no other options, so until patients have access to effective alternatives, this type of reporting is counterproductive.

Because the report does not clarify the actual risks, nor compare them with the risks of continued pain in the absence of treatment, the CDC wades into dangerous territory of conjecture. Moreover, an overreliance on retrospective observational studies makes it difficult to evaluate the true impact of opioid use on the incidence of birth defects or whether other factors, such as the mother’s health status and co-occurring tobacco or alcohol use, were greater contributors. Although neonatal abstinence syndrome can definitely be traced to opioid use, the CDC investigators did not examine why the majority of infants born to opioid-consuming mothers do not develop it.

In addition to fuzzy reporting of the science, ethical issues are apparent in considering all women of childbearing age as fundamentally “prepregnant” when it comes to clinical decision making regarding opioid analgesia. These concerns were well delineated by Kristen Gwynne in an online article at RH Reality Check. Clinicians must always weigh potential benefits against potential harm before prescribing opioid therapy. But this has always been true of opioids and all medications, including nonsteroidal anti-inflammatory drugs, antidepressants and anticonvulsants.

The result of incomplete reporting could be the withholding of opioids from people based on gender and age, regardless of pregnancy status, even when strong pain-killing medications are indicated or when safer alternatives are not available. In fact, according to the American Congress of Obstetricians and Gynecologists, “Abrupt discontinuation of opioids in an opioid-dependent pregnant woman can result in preterm labor, fetal distress, or fetal demise.”

To be viable, alternatives to opioids must be effective and be covered by public and private insurance payers. Commentators who suggest opioids should not be prescribed often fail to present this important perspective and also imply that harm from opioids is inevitable, an error that contributes to the stigma and isolation felt by those whose lives would be crippled without their legally prescribed medications.

And yet, slanted reporting continues. In February, another CDC report appeared, endorsing scientifically vague opioid classifications of “stronger vs. weaker” than morphine. In analyzing the February report, June Dahl, PhD, properly pointed out the error in failing to consider the differing pharmacologic factors, mechanisms of action, formulations and the clinical relevance of relative effectiveness when comparing the medications.

Given the concerns with accuracy of scientific reporting, is it reasonable to increase federal funding to the CDC to battle prescription opioid abuse, as requested? Only with an understanding of the real reasons for the current opioid problem can we solve the problem. Perhaps more dollars should instead go to the National Institutes of Health, which is in desperate need of more funding for pain research and to develop safer alternatives to opioids.

Regardless, solutions cannot succeed in the absence of recognition that uncontrolled chronic pain is a major public health problem, worthy of focus similar to efforts to battle cancer, HIV/AIDS and other life-threatening diseases. Education of clinicians is good but cannot create treatment options or adequate insurance coverage where none exist. CDC officials and others must think about the problem differently and with less prejudice against people with chronic pain. Often the focus is on cutting supply alone; but in reality, this is difficult to accomplish without harming people with genuine pain when the payor system does not adequately cover evidence-based alternative therapies, including multidisciplinary integrative programs.

Instead payors, particularly government programs such as the Centers for Medicare & Medicaid Services and workers’ compensation, prefer the less costly opioid methadone, associated with more fatalities per prescription than any other.

Although a majority of opioid-prescribed patients do not abuse or become addicted, it is undoubtedly true that some people have contraindications for long-term prescribed opioids. These are potentially dangerous medications, which can be fatal. But effective solutions require a multifaceted approach and cannot ignore the needs of people in pain. Opioids formulated with abuse deterrents are needed as is greater funding and less stigmatization of people with the disease of addiction. Certainly, payors should cover safer and more effective therapies.

As I’ve said before, I hope opioids will one day not be needed, and commentaries like this one will be unnecessary. If the public health problem from opioids is too great, then it is the purview of the CDC to report on access to safer and more effective therapies in the interest of the other great public health problem: chronic pain. It is not an option to deny people in pain access to opioids if alternatives are nonexistent or unavailable.

Lynn Webster, MD, is Past President of the American Academy of Pain Medicine, and vice president of scientific affairs at PRA Health Sciences. He is a Pain Medicine News editorial board member and author of a forthcoming book, “The Painful Truth.”

This column is republished with permission from Pain Medicine News.

You can follow Dr. Webster on his blog, and on Twitter @LynnRWebsterMD, Facebook 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 represent the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

Wear, Tear & Care: The Quell Pain Relief Device

By Jennifer Kain Kilgore, Columnist

When presented with the Quell pain relief device, people make one of two assumptions about me: 1.) I injured my knee, or 2.) I am a paroled felon wearing a very forgiving Velcro GPS.

As I said in my recent guest column, I have made it my mission to test as many pain relief products and therapies as possible. Some of them might be familiar to you; others will be of the “new and bizarre” variety. Whatever they are, I will be your Friendly Neighborhood Guinea Pig and review them for your convenience. I only draw the line at “Made for TV” products that are out to swindle the desperate consumer.

Pain patients are certainly desperate. We have a constant refrain humming through our bodies that plays a different tune for each person. Doctors are the musicians taught to hear those tunes -- but how can they possibly learn all the music? How can they hear your specific song and have the knowledge necessary to fix it?

The problem is that sometimes they cannot. They are deaf to your pain, just like that one whale who sings higher than every other whale -- none of them can hear her.

Thus far, doctors have been unable to hear the song that thrills along my nerve endings. This leaves me with no choice but to fend for myself. I could take the route at which they have hinted: find some street drugs and wait for the undertow to take me (not that this is the problem the media makes it out to be). Or I could travel a different road and at the same time realize that this life of mine includes pain. If I can’t get rid of it, I can at least muffle it.

image courtesy of neurometrix

As I said recently in my blog -- Wear, Tear, & Care -- I have been trying the Quell pain relief device, which is made in the great state of Massachusetts (i.e., my backyard). I have been using it every day for more than a month. Here are my findings:

• It absolutely works. I have been wearing it for 35 days. I assume there was some psychosomatic effect at first because I was so excited to try the device after months of hype. Once the initial thrill wore off, I was left with the knowledge that, yes, I have reduced my number of Motrin from 16 a day to four, give or take. I am still on Cymbalta and Lyrica for pain control and situational depression, though I can now contemplate reducing the Lyrica entirely. Before, that was not even a possibility.
• Wearing any kind of medical device during the summer is difficult. I can make the Stride of Pride and show if off with a skirt or shorts; otherwise I have to find pants under which the device can comfortably fit. This means that a good portion of my wardrobe (leggings, skinny jeans, etc.) is not compatible with the Quell. This is a minor concern.
• The Quell is $249.00. Replacement electrodes cost $30 and last for two weeks. I have worn mine for longer than that because A.) I can, and B.) I’m cheap. The electrodes break down quickly, but as a whole they are more durable than traditional electrodes and do not irritate my skin. With the EMPI device, the electrodes left blisters on my back.
• The iPhone app is quite lovely. It has a countdown clock so you can see how long the therapy has lasted or how far away it is. I have become adept at the internal calculation of 60 minutes on, 60 minutes off.
• Unlike other TENS devices I have tried, the stimulation is not distracting, so wearing it at the office is fine.

This is all well and good. But how does the Quell work?

According to their research paper presented to the FDA, the Quell works not unlike other devices that latch onto a dense cluster of nerves in the upper calf. Generally it is best for lower-body pain (sciatica and the like), diabetic neuropathy, and fibromyalgia. I myself have fibromyalgia-ish symptoms, since my pain radiates all over my body. However, I apparently do not actually have the inflammation that is fibro’s hallmark. Doctors will only commit to “chronic pain syndrome.” Since the device works for me, I can say confidently that it treats more than those three conditions.

The Quell is twice as strong as conventional TENS units, does not irritate the skin like traditional electrodes, is less conspicuous, has a mobile app, and can be worn at night. (They say it can be worn at night; I personally found the stimulation too distracting.) It activates endogenous opioids in the body (natural opioids, to say it in English), a different system than the one on which prescription opiates work.

It is, simply put, a wearable intensive nerve stimulator that follows the Pain Gate Theory: The impulses generated by the Quell block pain signals from reaching the brain. As it was cleared to be sold over-the-counter, it is currently not covered by insurance.

I know you pain patients out there loathe the numbers system (What is your pain on a scale of 1 to 10?). I also despise it; this is the only one that has come close to working for me. That’s why I have created a new system. Instead of assigning an arbitrary number to my pain, I am going to tell you what I can do now that I couldn’t do before.

1. I can cut down my daily over-the-counter medication.

2. I can walk for longer periods of time (36 days ago I could walk about 10 minutes before starting to limp; now I can make it almost 30 minutes).

3. I can sit for longer periods of time during the work day (prior to the Quell I’d last 10 minutes before having to get up and move around; now I can make it to 30 before movement becomes necessary).

4. I can focus better on immediate tasks.

5. I have more energy during the daytime, which makes me more social. I have been hanging out with friends more. However, I still practice the chronic pain version of sundowning in the evenings (i.e., I crash).

6. I have been able to resume my almost-daily yoga practice. I even did a 55-minute video the other day (which was   Aroga Yoga’s yoga class for those with chronic illness).

7. I have been able to resume my aqua aerobics practice two to three times per week.

8. I wear my emergency back brace less frequently.

9. I have fewer flares.

FINAL DIAGNOSIS: The Quell device has worked brilliantly for me. While it doesn’t get rid of all the pain I feel, it dampens enough of it so that I can more fully live my life. I hope that it can bring others as much relief.

Jennifer Kain Kilgore is an attorney in the Greater Boston area who also works as a writer and editor in her spare time.  She has chronic back and neck pain after two car accidents. 

You can read more about J.W. on her blog, Wear, Tear, & Care.  

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 Maps: Raising Awareness About CRPS

By Jessica Mendes, Guest Columnist

There is no shortage of books, articles, research projects and other initiatives dedicated to raising awareness or finding treatments for chronic pain. And rightly so. According to the American Academy of Pain Medicine, a recent market research report indicated more than 1.5 billion people worldwide suffer from it.

What we are sorely lacking in is education about pain, and how “patient as agent” is critical to avoiding a lifetime of disability. By this I mean public discourse to promote initiative and understanding on the part of the person afflicted with pain; including their participation and engagement in their own healing process.

This is an assertion I am fully qualified to make. A year ago I stubbed my toe; now, I am fighting for my ability to walk. I have Complex Regional Pain Syndrome (CRPS), and if this condition was better understood, especially among health practitioners, I wouldn’t be where I am today.

Luckily, I am not lacking initiative. It didn’t take me long to realize that mainstream medicine had nothing to offer me, so I committed myself to research. The sheer complexity of CRPS and its highly individual nature makes it very difficult to define, let alone treat. But the frequency with which I am asked about it continues to remind me how poor awareness is of this troubling condition. I feel a responsibility to share my take on CRPS in the hopes of shining more light in it.

CRPS – also known as Reflex Sympathetic Dystrophy (RSD) – is a disorder of the nervous system characterized by severe, unrelenting nerve pain. Its origins are in the brain’s maps or “pain maps.” The extent and nature of this dysfunction varies from person to person. In essence, CRPS causes a distortion or enlargement of these maps.

Brain maps responsible for pain also regulate other bodily functions such as temperature, pressure, vibration, sensation of movement and sympathetic control. Given that the nature of plasticity is competitive, if a map is taken over or “pirated” by pain, its other duties also suffer. This is a simplified interpretation of what I have learned.

As you can imagine, there is no exact science to how this manifests, so this is where individual symptomatology comes in. The way I see it, “hard" neuroscience defines a set group of symptoms and assigns them to a box called CRPS; but this disorder actually falls within the realm of “soft” neuroscience. It’s not western-medicine friendly.

Self-education and a multi-pronged approach are central to healing from CRPS. And that means understanding how your nervous system has gone off the rails, because it’s not going to be the same for everyone.

In my case, I have dysfunction in the sensory neurons that process temperature, pressure and vibration, but how I experience that changes from day to day. My lower leg often cannot tolerate the light breeze of a fan, the touch of cotton fabric or the pressure of a pillow beneath it, so nights are long as I struggle to find sleep. The vibration of a car’s motor, on a bad day, can immobilize me for a week. When I shower, I have to ensure the temperature of the water is precisely what my foot will allow. Slightly warm will inflame it, whereas cool will set off a firestorm of pain. Sometimes cool water feels warm and vice versa.

The nerve cells that process my sensation of movement aren’t working properly either. I cannot do yoga, and walking has to be rationed to gradually increase tolerance. Today, I may take the garbage out; tomorrow I might walk one block. I used to be able to do gentle swimming; now I do ankle rolls in bath water. The trick is to calm and balance your nervous system so that you can gradually “desensitize” and tolerate what is normally healthy, like movement and exercise. Reducing stress is paramount.

Many of the websites, articles or advocacy groups I have come across on CRPS parade images of fire or brain circuitry peppered with ominous red blotches. I get it. On an average day my foot feels ablaze or like it wants to explode. I might feel as if the skin is ripped off the sole or that I am walking on broken glass.

These sensations are real and part of the pathology for all who suffer from CRPS. The problem is that thinking about, focusing on, or agonizing over these sensations strengthens the connections in the brain that are feeding them, further enlarging the pain maps. And these images don’t help.

Another focus for a lot of these groups is the espousal of the mantra “there is no cure” in an effort to raise awareness and galvanize health practitioners to take action. But how do we define cure? Conventionally, this often refers to pharmacology in some form or another, if not surgical interventions. In this sense there truly is no cure. But if you spend any amount of time researching how CRPS develops, you realize how utterly impossible it is to find a one-size-fits-all solution.

And the term “cure,” as it is most commonly used, applies to a fix-it model that doesn’t really demand much from the patient. Not only does that framework lock us in as victims, it is pernicious for CRPS.

For these reasons I avoid the term “cure” and instead use “healing”, “treatment”, “regression” or “reversal”. All of these things are within reach for those with CRPS/RSD, the means of which can be found on a website I created called Pain Maps. But they demand our active participation in the healing process, and a deep-seated belief that a life without pain is possible.

Jessica Mendes is the founder of Pain Maps, an online resource center dedicated to neuroplastic approaches to healing pain and neurological dysfunction. It offers material, sources and ideas that enable non-invasive, drug-free options to reducing nerve pain while exploring new dimensions in the narrative of neuroscience.

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.

Miss Understood: Judged and Defeated

By Arlene Grau, Columnist

I like to think of myself as the type of person who always gets back up no matter how hard I get knocked down. It may not always be as quick as I'd like, but I find my courage and strength through every circumstance. Recently, I got hit with a big blow and I haven't figured out how to get back on my feet and keep fighting.

I had my disability case heard by a judge in May. I knew it could go either way, but I  felt like my lawyer had prepared a really good case and I had a chance.

My lawyer started to present my case to the judge, but as soon as he stated my disabilities the judge took one look at me and asked me how I knew I had Lupus and rheumatoid arthritis. I told him I had countless lab tests done, physical exams, two skin biopsies (I showed him the scars), x-rays, MRI's, and CAT scans.

The judge then asked my lawyer for “proof” showing that I do in fact have these diseases, because letters from my doctors won't do. People have been known to pay doctors to write them, he said.

I was amazed at what was happening. I understand why the judge was saying that, because there is so much fraud going on in disability cases. But I think it would be very hard to fake everything I have. I even showed him the scar I have on my wrist from surgery needed to repair the damage caused by arthritis. My lawyer showed him the file backing up my story, but he still looked like he didn't believe a word I said.

My lawyer was able to provide lab results showing that I am in fact positively diagnosed with rheumatoid arthritis and Lupus. But when he tried to explain them, the judge’s response was, "I'm not a doctor, I can't read these and confirm that."

In the end, the ruling was that my case would continue on another day --- when a rheumatologist provided by the state can either come in or phone in to confirm or deny that I am diagnosed with what I have.

It only took the judge about 10 minutes to decide he didn't want to hear my case. He didn't believe that I was sick, even with the proof documented right in front of him.  One was a lab summary with a footnote from one of the doctors where I was hospitalized, explaining that I was there because I was having an arthritis and Lupus flare.

All he had to do was read it, but he refused.

To date, I've been without disability benefits for 26 months and it has been the most stressful two years of my life. Even with the insurance that I'm paying for, I'm responsible for 10% of the cost of my health care.  My medical expenses are ridiculously high because I need infusions, biweekly blood work, MRI's, etc. -- along with weekly visits to my rheumatologist and monthly visits to see my pain specialist.

Right now I feel so defeated. No matter what I wanted to do or say, I had to sit there quietly and let that man judge me and rule over me with all his ignorant power.

I've come so far when it comes to dealing with people who refuse to understand my diseases or learn about them. But then my trial brought me back to a place where I don't want to be. Being judged by others is never fun. When you're being accused of such a big lie and your character is poked at, you can't help but get hurt and take it personal.

Someone once told me that they might deny me because I can't be 29 and disabled. My response to them was does a five year old child ask to be given leukemia? Does a 23 year old ask to be given breast cancer? Of course not. But sometimes those are the cards we're dealt.

I was two weeks shy of my 23rd birthday when I was diagnosed with RA and fibromyalgia. I was still able to work hard for another 5 years, until they started to take a toll on my body.

Just because the name isn't cancer doesn't mean it isn't a serious disease.

I wish this judge would hear the story of my journey with RA, Lupus and fibromyalgia so he could get a better understanding of just how advanced they're getting. But instead all he sees is the person delivering the information: A young, seemingly healthy, able body.

Frauds have ruined the system for those of us who truly need and deserve it.

Arlene Grau lives in southern California. She suffers from rheumatoid arthritis, fibromyalgia, lupus, migraine, vasculitis, and Sjogren’s disease.

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.

Power of Pain: Facing Insurance Challenges

By Barby Ingle, Columnist 

You may have heard about singer Avril Levine’s battle with Lyme disease, a tick-borne illness that left her bedridden for months with debilitating pain and fatigue.

It took a long time for Avril to be diagnosed correctly by doctors. She had to keep researching and advocating for herself before she was finally given proper treatment – a problem faced too often by people with chronic pain and illness.

Sometimes doctors cause these delays, but often insurance companies are responsible.

Americans receive their health care coverage from a variety of sources; through their employers, self-purchased policies, and public programs such as Medicare or the Affordable Care Act.

As the cost of healthcare rises, consumers have seen a significant hike in premiums and out-of-pocket expenses such as deductibles, copayments, and other cost sharing.

Insurance companies are also working to keep their costs down, through policies such as prior authorization, “step therapy” requirements, and specialty tier pricing on medications.

It can be a battle that is time consuming, frustrating, and depressing when an insurance company denies payments for a medication, procedure or medical device. Sometimes the issue is due to a provider entering the wrong code, but most often it is a cost savings issue. Insurance companies can make blanket denials and question whether a certain treatment is appropriate for you. 

What can be done to change this?

Step Therapy and Fail First

We need to abolish the unethical “Step Therapy” or “Fail First” practices by insurance companies – which require a patient to use a different (and usually cheaper) medication than the one prescribed by their physician.

There are patients from all over the United States reporting how they are being forced to switch from one drug to another. This has personally happened to me twice. Both times, I fought the ruling using my medical records and providers support, and the insurance company reversed the decision. However, others are not so lucky. In my case, I had already tried all of the medications that the insurance company was willing to pay for, and I had documented records stating my reaction to each of the medications.  

Usually, a patient can tell immediately whether a medication is working or not, and they should not be forced to stay on drugs that don’t relieve their symptoms. Applying step therapy protocols rigidly to a chronic care patient is not in their best interest and simply creates more challenges.

This practice is especially hard on pain patients who are women, minorities, and economically disadvantaged. Studies have shown these groups are most affected and are either disproportionately undertreated or untreated for pain. We must urge insurers to reduce health disparities in our communities.  

If you are faced with a step therapy situation, what can you do? I would suggest you appeal immediately. If you have already tried that medication, get copies of your providers’ records, and your journal entries, and submit them with your appeal.

You can use a journal to help the provider document how step therapy drugs fail to help or make things worse.  Note when complications and bad side effects occur, and report them to your doctor.

You should also have your provider fill out and submit a Medform 3500 to the Food and Drug Administration when you have a bad reaction to a medication or medical device. Send a copy to your insurance company. That documentation can increase the chances of a successful appeal  favorable to you.

Prior Authorization

There are many insurance plans that require prior authorization for expensive drugs or treatments and they may not provide coverage if you do not get prior approval. Once again, this tactic is used as a cost containment measure. Prior authorization covers the correctness, suitability, and coverage of a service or medication. 

The process differs with each plan, but is supposed to ensure that a patient will receive the appropriate level of care in the appropriate setting. This is actually a technique for minimizing costs, wherein benefits are only paid if the medical care has been pre-approved. It can delay care months to years, and can be life threatening and health deteriorating to the patient in many ways. 

Services that may require prior authorization include hospital admissions, back surgery, hysterectomies, maternity stays longer than 48 hours, observational stays, cosmetic procedures, experimental and investigational procedures, and some outpatient procedures.  

Specialty Tier

Insurance companies have divided medications and treatments into four main insurance tiers, based on type and price. The top and most expensive tier is known as the “specialty tier” or “tier 4 medications.”

Insurance companies classify the most innovative, expensive, and most essential to life medications as specialty tier.  These drugs can cost hundreds to thousands of dollars each month. Patients with chronic illnesses such as arthritis, Reflex Sympathetic Dystrophy, hemophilia, HIV/AIDS,  Crohn’s disease, Hepatitis C, multiple sclerosis, and many forms of cancer need these medications to help them function on a daily basis.  

According to the National Minority Quality Forum, 57 million Americans depend on specialty tier drugs that are often expensive and have no generic form yet available. 

With specialty tier pricing, a patient often pays a co-insurance instead of a co-pay, resulting in an out of pocket cost that can become astronomical. This often happens to patients who are  disabled, need catastrophic care, and have little or no income.

It is difficult to appeal specialty tier pricing decisions, as the medications are classified and a list is available to the insured at the time of coverage or when a medication is released to the market.

Many patients and providers give up when they get the first denial letter from an insurance company, but it’s important to keep fighting. An appeal can show a pattern that other patients with the same condition also need the same treatment. This can lead to an easier situation for other patients down the line, or if you need the procedure repeated.   

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

A Pained Life: Speak Up, Speak Out

By Carol Levy, Columnist

I saw an advertisement on TV a few days ago. It was for some sort of a patch they were hawking for those with pain.

The testimonials were typical: "I use it and it's wonderful," said one man. "I recommend it highly," says a woman.

One testimonial really caught my attention: "I use it because I don't want to become addicted to pain medication."

So now the lie is even in TV commercials: Pain medication leads to addiction. And that should be your first thought and worry.

Never mind the reality that few people who use opioids for pain management become addicted. The lie has taken hold and is now part of the myth and stereotype; there is an epidemic of painkiller abuse and overdoses, and pain patients are on their way to addiction when they use these medications.

What bothers me about this, other than the spread of and belief in the lie, is the too many posts from members of chronic pain groups who have bought into the mythology and do not understand the difference between addiction and dependence.

They write they were on such and such a medication, often non-narcotic drugs like Lyrica, Cymbalta or anti-convulsants; drugs that do not have addictive properties.

"I have tried to get off it but I get sick when I do. Could I be addicted?"

No. Not from the poster's words. It may be physical dependence, which is nothing to be sneezed at. It is a bad problem and requires hard work to get off the medication. But that does not make it addiction.

The American Society of Addiction Medicine defines addiction behavior as an “inability to consistently abstain, impairment in behavioral control, craving, diminished recognition of significant problems with one’s behaviors and interpersonal relationships, and a dysfunctional emotional response.”

PainEDU.org defines dependence as a “state of adaptation that is manifested by a drug class-specific withdrawal syndrome that can be produced by abrupt cessation, rapid dose reduction, decreasing blood level of the drug, and/or administration of an antagonist.”

I cannot recall every reading or talking with people in chronic pain who said liked the narcotics they were prescribed. No one has ever said to me, "Wow. I love the way this drug makes me feel."

They may write or say the opioid has helped reduce their pain and that makes them happy, but invariably this lament usually follows: "But I hate the way it make me feel. Foggy, dry mouthed, and slow."

I hate writing and saying this because we have so much on our plates already, just getting through a day with pain, but we have to be the advocates. We have to get out the word that we do not take these drugs for fun. For some of us they are truly life savers. And yet it is our voice that seems to be absent in the midst of all the media hoopla and sensationalism.  

It is past time for us to take up our pens and raise our voices. We are the ones who get hurt by the misinformation. It is up to us to change the conversation.

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.

Changing Our Country One Addict at a Time

By Mary Maston, Guest Columnist

It’s obvious that our current ways of dealing with addiction aren’t working. They have never worked. The entire process of making drugs illegal and incarcerating those who use, possess, and sell them has been an epic fail in every way imaginable.

The “War on Drugs” – a phrase coined by President Nixon -- has been raging for almost 45 years, longer than I have been alive. How many trillions of our tax dollars have been spent in that time and where has it gotten us?

According to the officials, the problem of addiction is worse now than it’s ever been, despite throwing people in jail left and right. Making things even worse, legitimate chronic pain patients are being lumped together with addicts and drug abusers -- making opioid pain medication harder and harder to get.

We haven’t solved anything, and we never will if this is the path we continue to take.

"Insanity: doing the same thing over and over again and expecting different results.” -- Albert Einstein

It’s time that we start thinking outside the box. We need a different approach and the police chief of Gloucester, Massachusetts may have found one.

Chief Leonard Campanello has worked in law enforcement for 25 years. In that time, I’m sure he’s seen just about every scenario imaginable and then some. Perhaps he’s grown tired of seeing the same people in and out of his jail repeatedly. Or perhaps he just has a bigger heart than most, and the desire to contribute to a real solution. That’s what I choose to believe.

After dealing with addicts repeatedly over the years, Campanello has decided to change the way he does things and tackle the issue from a totally different angle.

Campanello recently announced that anyone who walks into his police station and asks for help with addiction, and surrenders any drugs and paraphernalia they have, will not be arrested. Instead he/she will be put into a detox and rehab program, funded by the money the police department has collected from drug raids.

You read that correctly: Anyone who asks for help will receive it without judgement, persecution, fines, or jail time. It’s called the Gloucester Initiative.

It’s a bold move. It’s never been attempted before. Many may say it’s crazy, that it will never work. It goes against everything we’ve heard about addiction.

Get this though: it is working.

It’s an absolutely brilliant concept and it’s already changing lives in the short time since it’s been started. It’s also gaining national attention. There are many organizations that are starting to come on board, and because of that, the Police Assisted Addiction and Recovery Initiative  was born.

police chief leonard campanello

So far over two dozen people have entered the program. While that doesn’t seem like many in the grand scheme of things, it’s a start. The drugs those people had are off the streets, and they are getting help when they would otherwise be using and selling. What if 28 drug addicts were no longer on YOUR streets and in YOUR community? Would you feel a little bit safer, maybe a little less cynical? Everyone has to start somewhere.

This proves that there are people who are addicted and who truly want help, but haven’t been able to get it for any number of reasons. Maybe they can’t afford it – rehab facilities aren’t cheap. Maybe they don’t have insurance or if they do, it doesn’t cover extended treatment.

If they are using illegal drugs but haven’t been caught yet, maybe they are afraid of going to jail for the first time. Maybe they enjoyed being an addict for a long time, but don’t want to be one anymore and don’t know how to stop.

Think about it for a moment. This could be a huge game changer for chronic pain patients, especially if this initiative takes off nationally like I’m hoping it will.

Right now, everyone is so quick to label anyone that uses pain medication for any reason as an addict. What if addicts weren’t abusing anymore? Perhaps that would equate to better treatment for us, without the stigma of being judged so harshly because we actually need medications to function; not because we want to get high, but because we want to live somewhat productive lives and medication is the only thing that helps us.

Think about how much better your life would be if medical professionals got back to actually treating patients with debilitating diseases and conditions – respectfully – instead of focusing on policing everyone that walks through their doors and denying medical care.

I’m not naïve enough to think that this is going to completely solve everything. Not everyone wants help and there are some genuinely bad people in this world, but I’m holding onto hope that this can potentially make a positive difference in the lives of millions – the ones that do want help.

Putting people in jail doesn’t accomplish that, and there are people out there that would stop using drugs if given the opportunity to do it in the right environment.

Just ask those that have come forward. Out of all of the things I’ve read over the years on the subject of the war on drugs, this is the only thing I’ve come across that has the potential to actually change things for the better and make an impact.

That’s why I fully support this cause. I would be insane not to.
 

Mary Maston suffers from a rare congenital kidney disease called Medullary Sponge Kidney (MSK), along with Renal Tubular Acidosis (RTA) and chronic cystitis. She is an advocate for MSK and other chronic pain patients, and helps administer a Facebook support group for MSK patients.

Mary has contributed articles to various online media, including Kidney Stoners, and is an affiliate member of PROMPT (Professionals for Rational Opioid Monitoring & Pharmaco-Therapy).

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 Pain Clinics Fail Patients

By Jennifer Kain Kilgore, Guest Columnist

“You have exhausted all of your options.”

That is what I was told when I was denied as a new patient at Massachusetts General Hospital. Western medicine has officially given me the heave-ho.

Because I have a “long-standing relationship with another pain management clinic,” unless I am being referred for a specific procedure that my current doctors do not have, I am not allowed to become a patient elsewhere.

It’s so strange to reach the end of the road. It’s one thing to be told that the doctors are running out of ideas; it’s another thing entirely to have someone tell you that there is literally no other procedure in existence. All the treatments they are willing to try have been attempted. Science and research have not caught up yet. This is as good as it’s going to get.

What they’re willing to try. That’s the operative phrase here. Despite my decade of experience in the medical system, despite never exhibiting pill-seeking behavior, my pain management doctors refused to prescribe any kind of opioid safety net. If the pain gets really bad? “Go to the ER.”

Really? That’s the best you can offer? “Go to the ER”?

“I don’t think you understand,” I told my doctor. “I’ll have to quit my job. I can’t function like this.”

Shrug.

That’s the thing about pain management clinics. They do not cure. Most of the time they do not even have the power to manage. They try to dull the pain, to numb it, just long enough to get you out of their office. The problem is that pain is subjective. A finger slammed in a door can hurt worse than a fracture, and everyone thinks their pain is intolerable.

So if you keep coming back and complaining, then the problem must be in your head. Even though I told my pain doctor that I am already seeing a pain psychologist, she insisted that I meet with one in-house in order to come to terms with the “new” me. Like I’m not letting some kid sit at the lunch table with me. Play nice, you two!

I actually told her that when she said “you have to learn how to live with the ‘new you,'” not only did she make me want to murder everyone in my immediate vicinity, but she was also entirely patronizing. I’m sure I got some black mark in my medical file for that comment (“aggressive,” “argumentative,” “abusive,” etc.), but don’t tell me how to react to my issues when you have no experience dealing with them. I hope to God she never says those words to another patient.

Pain management doctors do not work well with patients who need more than the usual series of steroid injections. I’ve had the steroid injections, the ablations, the Botox in my muscles, the pills, the trigger point injections, the surgery, the infusion. There are no other procedures.

“We’ve done everything. So why are you still hurting? It must be in your head.”

Of course it’s in my head. That’s where pain is processed: IN YOUR BRAIN. My brain has learned these pain pathways, and my nervous system is constantly hyper-stimulated. It doesn’t take a Philadelphia lawyer to figure that one out.

 “Give her antidepressants. Give her nerve meds. Just don’t give her opioids.” That’s the reasoning my pain doctor kept parroting: “It’s been clinically proven that opioid medication doesn’t help chronic pain.”

I know that it doesn’t — not in the long run. Not if you take it every day, multiple times a day. All I need is a safety net for the really bad days. I was prescribed 14 Vicodin in March. Guess what? Still one left. Whole bottle of Tramadol? Untouched. I take them when I need them.

Doctors are more interested in protecting their own medical licenses than handing out medication to those who need it — which I can understand. If it were between my law license and some person I only see once a month, I’d go for the law license. For years, however, doctors over-prescribed until the government cracked down; now they under-prescribe and hope that none of their patients will notice. The pendulum has swung so far in the other direction that it’s only a matter of time before something breaks.

Pain management doctors must be frustrated with patients like me. It’s not like they’re huddled in a conference room, rubbing their hands together and muttering under their collective breath the names of patients they’re going to disappoint. I hate when I fail at my job. I’m sure they feel the same. But they are the gatekeepers, and they are in my way.

Everything that has helped recently has been found by my father, by my husband, and by me. I exercise as much as I can when the pain allows. I use a BodyBlade in order to strengthen my core muscles. I practice mindfulness and meditation. I stretch and do yoga on a daily basis. I walk at lunch. I get pain relief massages. I go to the chiropractor. I found the Quell pain relief device, which I adore and wrote about on my blog.

These are alternative forms of care, and they have been all found — wait for it — by people other than my pain management team.

We chronic pain patients truly have to be our own advocates. It is our responsibility to find the interventions that will help us. These treatments might seem strange or like some sort of hippie nonsense, but I am done being told by doctors that the pain is all in my head and that they can do nothing to help me. I will help myself. This is not the best it is going to be.

J. W. Kain is an attorney in the Greater Boston area who also works as a writer and editor in her spare time.  She has chronic back and neck pain after two car accidents.

This column is republished with permission from her blog, Wear, Tear, & Care.  

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.

Power of Pain: Avoiding Summer Travel Pain Storms

By Barby Ingle, Columnist

If you’re flying somewhere this summer, chances are you’ll have to contend with overcrowded terminals, flight delays, and security checkpoints. There are ways to make traveling easier and less stressful for chronic pain patients.

My first suggestion is to pack your medications in a carry-on bag. If your luggage gets lost, you won’t have to worry about where or how to get your medications.

Airport terminals are hectic and people are at a frantic pace, so by arriving early you can go at a slower, more relaxed pace and make the hassles of dealing with disabilities more manageable. Your goal is to make it to your destination on time, in a low pain level, and in a good mood.

When you decide to make a trip, it is best to plan ahead. I use the Internet to get destination information. I check out the floor plans of the airports I am coming and going from, and what types of foods are available in the terminals. I also request handicapped services from the airline, bus depot, car rental company, and hotel ahead of time.

If you are on oxygen, let the airline know 30 days prior to travel or as soon as you know that you will be flying. In-flight oxygen needs to be prearranged, and there is typically a charge. Then call 24 to 48 hours before your flight to confirm the oxygen arrangements.

At the airport, if traveling alone, bring tip money. I try to bring one-dollar bills and tip a dollar for each bag that I am assisted with, both when I am departing and at my destination. I also pay the person pushing my wheelchair one to two dollars for their assistance. I also have a scooter, so I do not always have to pay for the wheelchair assistance.

It is not mandatory to pay for help; however, the person pushing you often works for tips only or tips with a low wage.

Be sure to let them know if you want to make any stops to use the restroom or purchase food while they are assisting you. When they bring you to your gate, ask to be “parked” at the door or the start of the line. Make sure that the airline person sees you. If you sit off to the side, they may miss you, and you will not be able to take advantage of pre-boarding.

If you need extra time and assistance, you may have a problem. Typically, the flight attendant or ground crew comes over to me and moves me up in the plane if I have a seat towards the back, and they ask me if I need any assistance walking, or if I need an aisle chair to get to my seat.

Sometimes I board with the first group, when they call for people who need assistance. I do not tip the attendant who brings me down the jet way.

When I pre-board, once on the plane, if I need to take medication or I am nauseated, I ask for a small glass of water. If they do give you a glass of water, they must take it back before the plane takes off, so make sure you drink what you need when they give it to you.

Let them know while in flight if you need assistance in using the restroom or need blankets and pillows for comfort.

When you arrive at your destination, stay in your seat until your wheelchair assistance has arrived. They typically ask you to wait until the other passengers unload so that you do not hold them up or so that they do not bump against you and cause you further injury.

At baggage claim, if you are alone, ask the assistant to get your luggage and to bring you outside to meet your party. Once you are in a place you do not need assistance, give them their tip and thank them, so they may go help other travelers needing assistance.

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

198 Thoughts I Had While Watching ‘Cake’

By Crystal Lindell, Columnist

I finally got around to watching Cake, the movie about chronic pain starring Jennifer Aniston.

Aniston plays Claire Bennett, who suffers from chronic pain and has visions of Nina Collins, played by Anna Kendrick. Nina also had chronic pain, but in the opening scene we are told she killed herself by jumping off a highway overpass.

I would definitely recommend you see this movie. It’s currently playing on Netflix, and if I know anything about people with chronic pain, it’s that they all have Netflix. So get on that, and then read this.

Basically everyone in my life has recommended this movie to me.

Lots of spoilers ahead, obviously.

1. Well, I guess, since it’s on Netflix, I’ll give it a go. It’s basically free.

2. I swear if they show Jennifer Aniston “getting better” in any way I’m going to scream.

3. And I really hope she doesn’t magically “get off opioids” because that crap is not realistic at all.

4. Of course it opens on a support group.

5. Seriously, where is this support group? Because I have yet to find one for people with chronic pain anywhere near me.

6. Hey, that’s Lynette Scavo from Desperate Housewives!

7. I’m glad she’s found some work since that show ended.

8. Yay! It’s Anna Kendrick!!! I hope she sings something from Pitch Perfect in this movie.

9. Oh. Anna Kendrick killed herself.

10. That’s sad.

11. Why is this group so mad at Anna Kendrick?.

12.  If you have chronic pain, and you can’t at least understand why someone would kill themselves in that situation, then you don’t actually have chronic pain.

13. #SorryNotSorry

14. Look! It’s Rachel from Friends.

15.  I wonder if Ross is going to be in this too.

16. Nevermind, he’s probably on a break.

17. Ha! I crack myself up. 

18. Someone should tell Claire about dry shampoo.

19.  I get it, showers suck when you have chronic pain. But that’s why God invented Batiste.

20. The fact that Anna Kendrick ended up in Mexico after her suicide is actually kind of hilarious. In a dark humor kind of way.

21. Man, everything gets stuck in customs. Even Nina.

22. So Claire’s laying down in the back of the cab?

23. I’m assuming because sitting up hurts?

24. Whenever I try that I get super car sick because of all my meds.

25  I wish I had a really nice Hispanic woman to take care of me and make me quesadillas.

26. That would probably make it a lot easier to cope with my chronic pain.

27.  What? The freaking support group kicked Claire out? Is that a thing? That support group sucks.

28.  Lynette, I’m so disappointed in you.

29. Ug. Claire and her husband are separated. Chronic pain man. It effs up your love life.

30.  I always wonder how/why people try to keep a secret stash of meds. I never have anything extra to put in a bottle behind a painting. I use all of my meds, every month.

31. Yep, trying to sleep with chronic pain is a bitch.

32  And I cry throughout the night a lot too.

33. This movie got that part right.

34. I wish I had a pool like Claire.

35. Maybe if I had a personal pool in my backyard, I could go in it and feel better.

36. Why is the pool green though. Just the evening light? It makes it look like a scummy lake.

37. And the opossum isn’t helping the vibe.

38. Seriously, I need to move to California though, where you can apparently take a dip in the middle of the night, and it’s so nice outside that you can fall asleep in a lawn chair like it’s nbd.

39. I feel like this movie is trying to make Claire seem like a bitch, but honestly, when you’re in pain and you’re riding in a car, every bump really does make you want to die.

40. I try to be nice and witty with my doctors too, just to make sure that they don’t think I’m just a drug seeker.

41. Ahh. Wine and meds. The best meal ever.

42. Also, true story, the doctor I saw at the Mayo Clinic once told me that drinking alcohol could help with my pain. So it’s not as crazy as it sounds.

43. Even chronic pain, greasy hair and a massive scars isn’t enough to repel men when it’s Jennifer freaking Aniston.

44. Congrats Claire! You get it girl!

45. Yep, having sex with chronic pain sucks.

46. How can you be physically intimate when it hurts every time someone touches you?

47. So based on Claire’s housekeeper’s reaction here, I’m going to guess that Claire’s kid died and those toys belonged to that kid.

48. Yep, this movie really is trying to make Claire look like a bitch.

49. I mean, what is up with this scene between the housekeeper and her daughter?

50. Claire’s not a bitch though. She’s just in pain.

51. And apparently, her freaking kid died.

52.Those two things would drive anyone to crazy town.

53. Yay! Anna Kendrick is back!!! I hope she sings Cups.

54. So Claire is kind of trying to kill herself with help from Anna Kendrick?

55. I can see that.

56. I think drowning would be a particularly awful way to die though.

57. Oh look! It’s that chick from the Good Wife!

58. Who was she on that show? Like an incompetent lawyer or something? 

59. I wish I could get aqua therapy. There’s nothing like that where I live.

60. Yeah. I’m on Claire’s side here. I don’t think the super healthy chick in the water really understands how much it hurts.

61. Oh? Really? Someone with chronic pain hasn’t magically gotten better in six months?

62. SHOCKING!

63. Like I said, the healthy chick in the pool doesn’t get it.

64. Another drowning attempt.

65. See, drowning isn’t a fun way to go Claire.

66.  I knew she would quit mid-way through.

67. And by “quit” I mean, “decide to live.”

68. Again with the laying down while they drive stuff.

69. Seriously, I would be throwing up all over the place if I tried that.

70. Maybe I should try that.

71. I mean, long car rides are one of my biggest issues. Would lying down in full recline position maybe help?

72. Oh, Claire’s going to go see where Anna Kendrick tried to kill herself. Interesting.

73.  I really don’t think Claire is going to jump, seeing as how we’re only 23 minutes into this movie.

74.  It was dream.

75. Maybe.

76. Either way, Claire lives!

77. Go Claire! You totally should sue the support group!

78. Oooo! Anna Kendrick’s husband is Australian!

79. I LOVE Australian accents!!!

80. This movie has suddenly become an episode of House Hunters. “Look what we’ve done with the kitchen!” Fun.

81. The Australian guy looks strikingly like Chris Pratt.

82. Is Chris Pratt from Australia?

83. Man, I wish I was Jennifer Aniston with chronic pain. Even Australian Chris Pratt look-a-like is into her.

84. Claire and her housekeeper are going to Tijuana!

85.  I want to go Tijuana! 

86.  Is this real? Can you really get opioids without a prescription in Mexico?

87.  Now I REALLY want to go to Tijuana.

88.  I wonder how much opioids cost in Mexico.

89. The pharmacist in Tijuana just called Claire a rich, white woman. But that’s where this movie get chronic pain wrong. If all you do is sit around all day, drink wine, and pop pills, there is no way you are rich.

90. Oh, maybe Claire got some kind of insurance money when her kid died. I guess that makes sense.

91. Now I want Mexican food.

92. I really wish the only Mexican restaurant in my town hadn’t give me and my family food poisoning.

93. Crap. They got stuck in customs.

94. Just like Nina.

95. Oh. Hello there, Danny from the Mindy Project!

96. So Claire’s ex-husband was able to get them out of customs?

97.  I need to find an ex-husband who can get me out of customs.

98. “Tell me a story where everything works out in the end for the evil witch.” Ok Claire.

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99.  Now Claire’s back at the Australian guy’s house.

100. Apparently Australian guy is cool with her randomly showing up in the middle of the night?

101.  He seems weird.

102. Anna Kendrick was 31 when she died in this movie?

103.  Crap. I’m 31.

104.  And she already had a 5-year-old?

105.   I’m so behind in life.

106.  Wow, Australian guy is really mad at Anna Kendrick.

107.   I feel like if Anna Kendrick was in so much physical pain that she jumped off an overpass, then you know, maybe she was in a lot of physical pain. Something her husband doesn’t seem to be taking into account.

108.  But, also I get it: Grief, it sucks.

109. Billy Joel. Interesting choice Claire.

110. Ahh. More wine. Better choice Claire.

111.  Now Claire is back at the Australian guy’s house AGAIN?

112. Do you think they’re ever going to have sex?

113. Or no?

114. Really? Anna Kendrick had a bunch of pain meds in the house, and they’re still just sitting there in the medicine cabinet?

115. I call B.S.

116. Oh. Hey. Anna Kendrick is back again.

117. She’s sassy in this movie.

118. Are we ever going to get Anna Kendrick’s back story?

119. Like, did she have a bad back? Or MS? Or intercostal neuralgia? Or what? Why was she in so much pain that she killed herself?

120. Hello Australian guy’s son.

121. “I like any animal that bites.” Ok again Claire.

122. And we’re back at the cemetery.

123. Now we’re in a diner. With Anna Kendrick. Seriously? If we don’t get to hear Cups in about five seconds, I’m gonna be so mad.

124.  I’m so mad.

125. Claire, I hate to tell you this, but you’re officially losing your shit.

126. You’re yelling at a ghost in a diner? This does not look good for you.

127. And don’t try to blame the meds, because I take tons of meds, and I don’t see Anna Kendrick anywhere.

128. Amazing Hispanic housekeeper invited Australian guy and his son to lunch.

129. AND she’s going to make mango tamales.

130. Now I want Mexican food again.

131. And we’re back with the healthy lady in the pool who has no clue.

132. “Sometimes I suspect you think I’m just this uncooperative, old bitch who’s making all of this up.” Preach Claire. 

133. Did she just ask Claire if she wants to get better?

134. Pretty sure everyone, everywhere with chronic pain WANTS to get better.

135. It’s Lynette again.

136. Really? Claire made you look unprofessional Lynette? Pretty sure you kicking her out of group was what made you look unprofessional.

137. Vodka from Costco solves everything.

138. What the heck was the point of that scene?

139. Are they just advertising Costco?

140. Woah! Claire curled her hair!!

141. You look nice Claire.

142. Oh no. Claire is going to try to lend her dead kid’s swimsuit to Australian guy’s kid.

143. This is not going to go well.

144. Nope. Didn’t go well.

145. Thank God for the nice Hispanic housekeeper.

146. She fixes everything.

147. Even Claire.

148. Australian guy, “How can you still live here?”

149. Umm, well, it’s a gorgeous house in California, with a freaking pool, that’s how.

150. This lunch is going so well.

151. Nevermind.

152. Hey, that’s Lynette’s real-life husband at the door.

153. Yep, that’s pretty much how I would react in that situation if I was Claire.

154. TBH, that guy was dumb for even showing up at Claire’s house.

155. Jerk.

156. So wait, did Claire try to kill herself with the pills?

157. Or was she just trying to take a lot of pills so she would feel better?

158. And there’s the nice Hispanic Housekeeper again.

159. Seriously, I wish she was my housekeeper.

160. Hello again, Anna Kendrick.

161. I would totally want to have sex with the entire Madrid soccer team too.

162. Soccer players are hot.

163. Baking a cake is cool too, I guess.

164. Oh. A cake. I get it now.

165. “Saints don’t jump off bridges.” Don’t they?

166. Ok. Sure, Claire. You’re just going to go off your meds cold turkey. Uh huh.

167. Why would they put up a drive-in theater right next to train tracks?

168. Wouldn’t that make it hard to hear the movie?

169. Claire is totally going to try to kill herself on those tracks.

170.  Anna Kendrick, “What would Saint Jude do?”

171. Claire, “I bet that son of a bitch would lay down on those tracks and just let Union Pacific put him out of his misery.”

172.  Agreed.

173. Mmmmm. McDonald’s French Fries.

174. Those things are so delicious.

175. You WERE a good mother Claire.

176. Maybe.

177.  We actually don’t really know.

178. And, once again the Hispanic Housekeeper to the rescue.

179. I can totally understand the housekeeper’s Spanish.

180. Well some of it.

181. I could totally get by in Argentina.

182.  Really? Someone stole their car? Because their lives don’t suck enough.

183. Why does every single movie and TV show ever set in California feature a runaway?

184. Everyone must run away to LA.

185. I should run away to LA.

186. Runaway: “Gross. I won’t do porn.” Famous last words.

187. “A homemade, yellow cake with fudge frosting.” That does sound good.

188.  Why can’t the housekeeper make the cake for Claire though? Because it’s American food?

189. I feel like the housekeeper could handle it. She makes mango tamales for goodness sake.

190. That is a gorgeous picture of Claire’s son.

191. Seriously, if I had a kid die AND I had chronic pain, I’d be a way worse shape than Claire.

192. Aww. Look. She got Anna Kendrick’s kid the cake that Anna Kendrick wished she could make him AND a huge shark kite.

193. Claire sat up. In the car

194. And that’s it. That’s the end.

195. Effing independent movies. They always just stop in like the middle of scene.

196. But also, chronic pain. It never ends either.

197. So maybe the best you can hope for if you have chronic pain is learning to sit upright in the car?

198. And cake.

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.

Why Choosing a Doctor Is Like a Job Interview

By Pat Akerberg, Columnist

There’s an online answer for just about everything.  If you use a search engine, you are soon inundated with links, marketing products and services to match your needs.  There are even dating services that connect you with possible romantic partners.

Choosing the right doctor isn’t quite as simple as shopping for a new pair of shoes or making a love connection. Shoes that don’t fit can be returned. First dates that don’t work out can be cut short.  But our medical needs carry significant costs, benefits and risks. The right -- or wrong -- doctor can be life changing.

Like any important decision, it’s best to begin with an approach in mind. Doctors carefully scrutinize us as would-be patients.  Isn’t it in our best interest to make the same effort? 

After all, we both have important needs to fill.  So what if we approach our decision just like a job interview, with us doing the hiring?

When I worked in business, the three key points of a solid job interview were focused on:

1. Does the person have the competence to be effective in this role?

2. Are they a “good fit” for the job requirements?

3. Does the person pose any risks or concerns?

If any of those questions turned up a negative answer, that candidate was eliminated. We can borrow from this formula as we search for the kind of doctor that we need.

Competence

This includes expertise, years of experience, a solid track record, and the transparency to share it.  Without transparency, there’s very little objective information available, like a surgeon’s complication rates, for instance.  

There are some ways to get a feel for this prior to your appointment.  The internet can be helpful with this part of your research.  You can conduct a search for support groups for your particular chronic pain condition. (Example: “support groups for trigeminal neuralgia”).

In my case, I rely upon one that I consider to be my most valuable resource for facial pain – it’s the TNA Facial Pain Association.  Once I joined, through discussion groups I could get candid feedback from other members about their experiences with different doctors or treatments -- and learn who the leading experts are in the field. Support and friendship with people who truly understand what you’re going through are extra benefits

An informative website from the Agency for Health Care Resources and Quality can also help with several quality of care topics, including pertinent questions to ask your doctor.

The leading experts may not be in your geographic area.  Will you allow that to keep you from consulting with them?  Some doctors offer Skype consultations if you ask.  Local may not always equal the best chances for success.

A Good Fit

From a doctor’s perspective, a good fit requires you to share factual information about yourself so that they can effectively treat you. 

A good fit from a patient’s perspective begins with a list of the traits and characteristics that meet your unique needs.  These are your “must have’s.”  Here are a few of mine for doctors:

• Listens and makes eye contact with me
• Seeks to understand, invites my input
• Seems engaged and interested in addressing my situation
• Takes time to explain things to me
• Comfortable with questions (isn’t defensive or dismissive)
• Flexible, operates well in a partnership
• Transparent about treatment outcomes
• Offers a clear plan

There is no substitute for the experience gained from tuning up your radar and conducting your own interview.  It can be helpful to have a spouse or family member accompany you to appointments to compare notes. 

You may want to make a “nice to have” list too. People in pain often want some empathy from healthcare providers, yet may not always get it.  Is empathy a “nice to have” or “must have” for you? 

Risks and Concerns

Caution is also a part of doing your due diligence to find the best possible doctor.

Unless there’s an extreme need for aggressive treatment, a good rule of thumb to minimize risk is to start with the least invasive, lowest risk treatments. These are often done by practitioners who offer complementary, alternative approaches (acupuncture, physical therapy, chiropractic, homeopathic, etc.)

There is no substitute for doing your homework and becoming knowledgeable about several important things:

• The costs involved for services and treatments, and how they relate to your insurance coverage and out of pocket expenses. Healthcare Bluebook uses a nationwide database to estimate a “fair price” for everything from drugs to surgery to x-rays.
• Patient reviews and experiences with a physician.  There are a number of websites where you can read what people are saying about a particular doctor, including RateMDs, Vitals and Healthgrades.
• Red flags like sanctions, malpractice claims, or medical board actions against a physician can usually be found through your state medical board or licensing agency.  
• The latest research studies related to your condition.  It will serve you well to be aware of the most effective treatments, the odds for success and potential risks. You can see published research studies at PubMed and the National Institutes of Health.

In terms of knowing the risks upfront about treatments, later is too late if the unthinkable should happen.  You don’t want to be left on your own to scramble for help. 

In the end, it never hurts to have more than one choice available or more than one opinion before you decide. 

Becoming informed will empower you to be your own best advocate when entrusting your medical care to someone. Just like any good hiring decision, choosing the best doctor can prove to be an investment well worth your active involvement.

Pat Akerberg suffers from trigeminal neuralgia. 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.

Power of Pain: The Benefits of a Positive Attitude

By Barby Ingle, Columnist

Mental health can be disrupted when living with a chronic illness -- even more so when it involves chronic pain. Anxiety, depression, isolation, and feelings of hopelessness and helplessness can increase to dangerous levels -- particularly for people who have been suffering with a pain condition for a long period of time.

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

Depression and thoughts of suicide are common among chronic pain patients – so it is helpful to create a strategy to get through the rough times. Chronic pain patients learn over time that they can better cope and adjust to both physical and psychological problems with the help and support of spiritual guidance, family and therapists. Creating an arsenal of tools, such as spirituality, physical modalities and meditation, are all ways to better your situation. 

Chronic pain is not understood very well, and there are physicians and psychiatrists who believe that it is all in our heads or that people just complain for the sake of workmen’s compensation or personal injury cases. If we are seen as malingering patients who just won’t go away, doctors who don’t understand chronic pain may find it difficult to look for any other diagnosis other than psychological.

With the loss of independence and function, it is hard for many patients to accept their changing life. Be sure to surround yourself with a team who is on your side, or you will be in a fight with long-term health consequences that you will have trouble winning.

It is important to maintain a healthy lifestyle, including getting enough sleep, exercise, and eating healthy foods.

Patients with chronic pain typically lead a more sedentary lifestyle, making them at greater risk for developing other medical problems, such as cardiovascular disease, diabetes and osteoporosis. The risk for these conditions is heightened with inactivity. 

Creating a positive attitude starts with being inspired. Begin by finding an interest or hobby you can become involved with and will 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. Just because you are disabled does not mean you are not worth anything. I have learned that every person has value. Believing in yourself and 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.

Negative situations are bound to appear, but when you are looking for solutions and displaying self-esteem and confidence, you will also attract other people to participate in helping you accomplish your needs and goals. Try looking at failure and problems as blessings in disguise. Doing so will help solutions find you. Seize the opportunities in everyday life. Using your outings to inform others about your condition and finding pleasure in minor accomplishments are ways to increase your power of positive thinking.

There are great benefits to having a positive attitude. Staying optimistic will give you more energy, happiness and lower your pain levels. Achieving goals is a great motivator for positive thinking. 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. 

Staying calm and positive creates an atmosphere for greater inner strength and power. You can also create better communication with a calm positive attitude, which will assist you in working with your doctors and caretakers. When you take life one task at a time and approach each challenge with optimism, it leads to fewer difficulties encountered along the way and increases your ability to overcome problems.  As my father always says when I am having a bad day, “Tomorrow will be a better day.”

No matter the challenges of today, they will pass, and in retrospect they will not seem as bad as time moves on. The challenges may just turn out to be a bump that looked like a mountain at the time. Try displaying a positive attitude, and the moods of others and the challenges of life will become easier to deal with.

Choosing to be happy starts with you. No person or thing can make you happy and positive. It is a skill you have to practice and develop when living with chronic pain. When you are able to live in a happy, positive and optimistic light, your life will become a life worth the ups and downs that come with it.

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

How Chronic Pain Ruins You Financially

By Crystal Lindell, Columnist

I was already living paycheck to paycheck before I got sick. I mean, rent in the Chicago suburbs doesn’t pay itself and journalism isn’t the lucrative job I think it used to be back when Clark Kent got into the business.

But then, I woke up one day with horrible pain in my ribs and my bank account somehow got even worse. Is there a number below zero? Because that’s about where I like to keep my balance.

I’m not telling you this in an attempt to solicit any type of personal donations. I just want the world to know what those dealing with chronic pain are actually dealing with financially. I want to give a voice to all of those people out there who are too sick to take a shower and, as a result, are too broke to upgrade their tacos to supreme.

I can still remember the first time I went to pick up a name-brand prescription at the local Walgreens, and being completely horrified by the fact that they wanted a freaking $50 co-pay. That’s a tank of gas. Or a cell phone bill. Or like three dresses at Kohl’s during a good sale.

Now, I’d kill to get all my drugs for $50.

I’m an American. I have insurance. I have a job. You wouldn’t think getting some random pain in my ribs would completely ruin me financially.

It has.

There are the co-pays for the doctor visits and the drugs; the money I owe before my deductible each year for the MRIs and the ER visits; and the vain attempt to find cures from snake oil salesmen offering alternative medicine that’s never covered by medical insurance.

I have so many medical bills that I can’t even keep track of how much I owe which doctor anymore.  Let’s just say, it’s “a lot.”

But it’s not just the medical bills that have to me too broke to buy fresh fruit on the regular.

It’s kind of hard to keep a job, when you literally don’t know from day to day if you’re going to be able to get out bed.

I’ve been very lucky in that my full-time job has been extremely accommodating, allowing me to mostly work from home and even take breaks during the day as needed. I know that if I had any other job, I would have had to file for disability a while ago.

That doesn’t mean I haven’t lost anything though. Back when I was healthy, I was able to maintain a side job as a part-time youth leader. I had to walk away from that when it became obvious that I couldn’t be sure I’d be able to get out of bed and make it to church most Sunday mornings. And when I resigned, I also gave up $10,000 a year.

Now, I’m barely making enough to make ends meet.

I spent the entire second week of June with $0.00 in my bank account.

And I can’t exactly go looking for a new job to make up for that $10,000 pay cut. I mean, where else am I going to work that allows me to make my own hours and write feature stories in my pajamas on the couch?

So, I’m stuck. I’m stuck in job I can barely hold onto that only pays me barely enough to eat on a daily basis.

When you’re well, it seems like you’re constantly hearing about fundraisers for sick people. Someone, somewhere always seems to be walking for cancer, or hosting a fancy ball for MS, or doing an ice bucket challenge for ALS.

But there are no fundraisers for people like me. Nobody does a 5K for chronic pain — maybe because most people with chronic pain are too sick to walk 3.1 miles.

I think there’s also still a lot of stigma associated with chronic pain. A sort of, “Well if you would just give up gluten and go to a chiropractor, you’d get better, so it’s kind of your fault.”

I get it, I mean watching someone lay on the couch all day with an illness nobody can see doesn’t exactly scream, “I’m super sick.” It’s easy for people to assume you’re just too lazy to get better. After all, if it’s just a matter of will power, then they don’t have to worry about the same fate becoming them.

And, I’ve noticed that people never like to use the word “sick” to describe chronic pain. They much prefer, “I’m in pain,” to “I’m sick.” It’s a way of separating those suffering with daily pain from the “truly sick.”

The thing is, having chronic pain does make you sick. It’s an all-encompassing chronic illness just like any other all-encompassing chronic illness. And it steals little pieces of your life in exactly the same way.

Sometimes, when I’m in really bad pain, when I’m literally so sick that I can’t even get to the bathroom, I think about a world where I would be forced to apply for disability. But then, I’d be even more broke than I am now.

I’m not sure what you’ve heard, but Social Security isn’t exactly paying people with bags of gold. Everyone I know who’s living on disability payments is barely living. It’s not exactly the kind of life I thought I’d end up with back when I got my freaking master’s in journalism.

But I guess that’s the thing about chronic pain. It completely destroys everything about your life that you thought you’d end up with. It wipes out all your hopes and dreams, and makes you start all over with nothing. And then, it sends you a hurricane just to make sure you got the message.

Being broke all the time only makes it that much worse.

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.

A Pained Life: When Habits Hurt

By Carol Levy, Columnist

I am a creature of habits, some of them bad. Not the “I can't stop eating chocolate”  kind of bad,  but bad in that I don’t always follow my own advice.

For example, I have a bad neck and as a result lifting something heavy often leaves me with worse neck pain. Every time I lift something heavy, I hesitate and think, “You need to put on the neck brace first. You really need to do that.”

Then I get annoyed and tell myself putting on the neck brace would be too much trouble.

The fact that I leave the brace out on the dresser and it is easily accessible makes no difference. My neck is held together with clamps and screws. How can a neck held together with a bunch of metal not be able to pick up anything, no matter what it is?

The fallacy of that thought is proven each time I move something heavy. But I don't heed myself and I pick it up anyway. Bad habit #1.

Then comes bad habit #2. The neck brace is supposed to help hold up my neck. But even when I wear it, I fight it. A good example is what happens when I take out the trash

The containers are a little ways away from my apartment. I do not want to have to make a number of trips (there is always a minimum of 2 large bags and more often 3). At least one is filled with cat box litter and is always heavy. The extra weight turns me into a turtle. I automatically scrunch up my shoulders and lower my neck as I lift the bags, feeling that somehow makes me stronger.

It doesn't, of course. And once I am finished my neck hurts horribly and the pain exhausts me.

So why don't I learn my lesson? Why do I fight doing a really simple thing that will help me?

One reason is denial and the other is looking at the short term rather than the long. I have to make the decision to accept what I can and cannot do -- sometimes just out of sheer stubbornness -- if I want help myself and reduce the pain when and where I can.

It is a lesson so hard to learn because it comes out of an acceptance of our limitations. At the end of the day, it is not the physical things that I do or refuse to do that cause the pain. It is my refusal to accept. Then I’m not a turtle but an ostrich, keeping my head in the sand.

I wish they had a neck brace for that.

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.

Power of Pain: Take Charge of Your Pain Care

By Barby Ingle, Columnist 

When it comes to living the best life you can, everyone has choices. There are even more choices for those who face a chronic illness. The patient can either let the disease run them or they can sort through the system and take control of their disease.

Coping with a chronic condition takes hope and self-awareness. You can make it through the toughest of situations. I know because if I can do it, anyone can.

Your first goal should be getting a correct diagnosis. If you need to go to multiple providers, take the time to do it to help prevent your health from deteriorating. Each provider has their specialty as well as treatment options with which they are comfortable. But that does not always mean they have the right plan for you or that another option won’t work. If you are not comfortable with the ones offered by your current provider, find a doctor who you trust to try different treatment options.

Getting organized is very important. It will take work in the beginning, but it gets easier as you go. You will save yourself from more pain by being organized in your approach to treating your chronic medical issue.

It can be very aggravating to deal with a kidney stone or torn ligament, but at least there is an end in sight. You can get back to a “normal life” once the stone passes or the bone break heals. Other conditions such as heart failure, diabetes, Lyme disease, multiple sclerosis, Reflex Sympathetic Dystrophy (RSD), arthritis, osteoporosis, and neuropathy can be more of a challenge and usually last a lifetime.

Take charge of your disease instead of letting it rule you. Some doctors, friends, and even family may say, “Just live with it” or “Get used to it.” But you are the one who lives with this chronic condition. You can learn to manage life around the symptoms and problems, without losing yourself.

For the person in pain there is usually a loss in quality of life. This can be due to financial burdens, loss of social support and  depression. Being depressed can result in isolation, loss of self-esteem, and self-worth.

It is important to recognize that we need support as patients. We need positive attitudes and must recognize there will be life changes. Some will be easier, such as changing your diet or beginning a physical therapy routine. Others will be more difficult, such as having to sever ties to a family member or friend who is hindering your recovery. We also need support from our healthcare providers.

Most of all, we need to recognize that we are responsible for ourselves and that successful treatment may result in necessary lifestyle changes that only we can provide to ourselves.

We all deserve to have our pain taken seriously. To have the pain managed instead of under-treated, untreated, or over-treated is an important aspect of successful outcomes. Pain must be managed effectively and in a timely manner. The underlying condition needs to be addressed while the pain is being managed.

Remember, every patient is different and doctors only know what they have been exposed to in their schooling and continuing education classes. For example, if they are a regular attendee at a pain education conference they may skip the class on multiple sclerosis or Lyme disease because they have a greater interest in migraines. As a patient it is up to you to become the chief of staff of your medical team.  Develop a strong team willing to help, learn, and treat you.

Chronic pain is a disease in itself. Our medical system needs to recognize this and change its practices to prevention, instead of just treating the person after they’ve become ill. For example, we should teach children about good posture and body alignment, and have them practice it. This can help them keep the habit throughout adulthood, cutting down on back issues and conditions that lead to the need for chronic care.

We must be mindful to get the proper healthcare professionals on our team. The goal is to receive effective relief, and be able to organize and manage all aspects of life. Finding good healthcare and support systems will lower the number of hospital visits, the amount of time spent in the hospital, unnecessary trips to the emergency room, repeated tests, and inadequate treatments. All of which contribute to the high costs of healthcare. 

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

More information about Barby can be found at www.barbyingle.com and at www.powerofpain.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.