Dear AARP: Stop Picking on Pain Patients

(Editor’s Note: Last year PNN columnist Rochelle Odell wrote an article critical of the American Association of Retired Persons (AARP) for publishing a special report entitled “The Opioid Menace.” The report claimed that many older Americans had become “new opioid dealers” who were fueling the opioid crisis by “selling their prescription painkillers to drug pushers.”

AARP recently published a new bulletin, which focuses on how scammers are bilking Medicare for $60 billion annually. Once again, AARP claims that Medicare fraud "puts deadly pills on the street" and helps fuel the opioid crisis. In response, Rochelle wrote this open letter to AARP’s editors.)

Dear AARP Editors,

I received the AARP Bulletin and at first found your cover story on Medicare fraud interesting. Fraud is a major problem that will need patients, physicians and law enforcement to resolve. It causes healthcare costs to rise, which many of us on Social Security and fixed incomes can’t afford to pay.

As I got towards the end of the bulletin, my anger began to rise as I read "The Opioid-Medicare Connection." You claim that “shady doctors are writing bogus prescriptions for opioid painkillers” using stolen Medicare ID numbers and that “the pills are then sold on the street for huge profits.”

“The practice is shockingly common, and the impact is severe. For Medicare, it means covering the cost of countless millions of high-priced pills that never should have been prescribed. At the same time, prescription opioids are responsible for an estimated 95 overdose deaths a day in the United States,” the article claims, without ever citing a source for that information. 

It brought me back to last summer when AARP published "The Opioid Menace." Why is AARP constantly attacking opioid pain medication? Why do you continually write misleading information about opioids? Could it be dollar motivated? 

Then I read about AARP's survey on medical marijuana, which found that a majority of older Americans “think marijuana is effective for pain relief and should be available to patients with a doctor’s recommendation.”  I have to disagree with the survey findings. There are many of us who have tried medical cannabis and received zero benefit. It did nothing for my pain. 

Then it dawned on me, of course insurance providers such as AARP would like more patients to use cannabis. As it becomes harder for us to get prescription opioids, many pain patients are turning to cannabis, a treatment that AARP and other insurers don't have to pay for. How much will that fatten your bottom line?

I find it hard to believe stolen Medicare ID numbers play that big of a role in the opioid crisis. Prescriptions for opioid medication are tracked more than ever, with doctors, pharmacists and insurers having instant access to databases to see just how many prescriptions a patient is getting.

I have been on Medicare since 1997 due to becoming disabled by Complex Regional Pain Syndrome (CRPS). There has never been a time that I did not have to present a picture ID when picking up an opioid prescription. And if I was unable to pick them up myself, a friend or relative had to present my ID confirming it was indeed for me, along with my current address.

Please explain how the "shady doctors" you referred to in your article are able to pull off this "shockingly common" fraud and make “huge profits.” As in last year's Opioid Menace article, AARP uses minimal references to support these claims. It was interesting you referenced only one physician who did this, only one. 

Medicare just published a new rule starting in 2019, which impose new limits on high dose opioids and requires “high risk” patients to see a specific physician and use a specific pharmacy. Think of the money you can save now. More patients paying out of pocket for medical cannabis and prescription opioids being reduced or stopped. 

Whatever happened to AARP being there for us older Americans?

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

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

Should You Record Your Medical Appointments?

By Barby Ingle, Columnist

My memory troubles started soon after developing Reflex Sympathetic Dystrophy in 2002. “Brain fog” or “pain brain” is a common symptom of RSD, fibromyalgia and other chronic pain conditions. Our brains have trouble focusing on short term memories and storing them for easy recall.

Even now, in a semi-state of remission, I have trouble saying the right words at the right time or remembering if I have seen a movie before. To help my memory and keep appointments, I started keeping a “to do” list and using a color-coded calendar and a medication dispensing system. I also made a habit of recording phone calls and conversations with my healthcare providers.

I’m not alone. According to a recent JAMA article, about 15% of patients in the UK secretly record their medical visits, often using their smartphones. I have been recording since 2003, after I realized that my memory was weak and that I needed assistance to better comply with my care between appointments.

How many times have you hung up the phone and your spouse asked, “Who was that? What did they need?” Or they came home from work and asked, “What did the doctor say?” or “What did you do today?”

And you can’t answer.

Before you think, “Oh, Barby must have been high on her pain medication,” that for me is a big fat NOPE. It happened to me when I was not on any medications. It is a symptom of my medical condition, not a symptom of the medications I take. For some patients on other medications that may be a problem, but it only adds to the already challenged mind of someone with chronic pain or traumatic brain injuries. The worse the pain gets, the worse their memory gets.

While you're talking, you think, “Oh, this is important, I will remember this.” Yet, you don’t. You can’t recall what you had for breakfast or when you last took your medication, let alone the intricacies of a doctor appointment.

Studies show that recording medical appointments reduces malpractice claims and leads to better understanding from patients on what their care is and why. This leads to better patient compliance and engagement in their own health outcomes.

The University of Texas Medical Branch is promoting patient recording of their visits. They tell patients it is an open policy that is there to protect them and their providers. Check out the video they created: 

Is It Legal?

I live in a state where recording a conversation only has to be known by one party. But if you are in New York or California, you have to inform and get permission from all those who may be recorded in advance.

Sometimes I record in secrecy, but most times I have my husband or sister record the appointment -- and it is quite clear what they are doing. In 15 years of doing this, I have only had one doctor ever ask me to erase the recording. That was because he had other providers in the room examining me and he talked about proprietary information that didn’t have to do with my medical condition.

I know that when I am under stress or have high pain levels, I need to record or have someone take notes at the appointment or both. It’s hard to remember if you’re supposed to take a new medication twice a day before meals, on an empty stomach, or once in the morning and once at night. Appointment times are also getting shorter and more filled with new medical terms and information that is important for us to remember.

In general, a healthy person only remembers about 25% of a conversation as soon as it is over. If you have a stressful chronic condition, even remembering that much is almost impossible. So why not record for your own safety? With most smartphones, all you have to do is press record at the start of the appointment and then hit stop at the end.

You’ll be better engaged, have an accurate account of the appointment, and be able to refer back to it when you get home and someone asks, "What did the doctor say?"

Barby Ingle lives with reflex sympathetic dystrophy (RSD), migralepsy and endometriosis. Barby is a chronic pain educator, patient advocate, and president of the International Pain Foundation. She is also a motivational speaker and best-selling author on pain topics.

More information about Barby can be found at her website. 

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

How CDC's Opioid Guidelines Killed My Mother

Sheila Ramsey, Guest Columnist

For the past year, I have been reading the heartbreaking stories being posted about the degrading and inhumane treatment of the elderly, critically ill and disabled persons by our government, healthcare institutions and physicians.

And all I can do is sit here and cry, thinking about the struggles that my mother went through for the last 25 years of her life. She was a diabetic for 40 years, had rheumatoid arthritis, osteoarthritis, degenerative disc disease, high blood pressure, depression and cystic lung fibrosis. These conditions caused her much pain every day.

She was placed on a low dose of hydrocodone 20 years ago. It did not completely erase her pain, but made it manageable to where she wasn’t completely bedridden.

Then in 2016, when the CDC came out with their opioid "guidelines," her doctor reduced her dosage three times. I watched her suffer immensely and she pleaded with him to raise it several times. He would not.

Her life became more miserable than before and her depression worsened. She even had to stop driving, relying on me and a few friends to take her to appointments and grocery shopping once a week. Which were the only times she got out of her small one-bedroom apartment.

In May 2017, her lung disease got worse and it was hard for her to breath due to panic attacks several times a day. Her pulmonary doctor placed her on a low dose of Ativan to reduce her anxiety.

JANET DIXON

As soon as her primary care doctor found out about that, he immediately gave her a choice of which illness she was willing to suffer from: panic attacks or chronic pain due to her many incurable illnesses. She chose the Ativan and he immediately stopped her pain meds. She then had to start using a walker instead of her cane.

In June 2017, she had a friend drop her off to see her lung doctor. While waiting for the elevator, she tripped over her walker, fell and broke her hip. She went into the hospital for surgery, caught pneumonia and had to be placed in a medically induced coma. She also had congestive heart and kidney failure. She was waiting on a lung transplant but did not make it. We had to take her off life support on October 25, 2017.

This was all due to complications from being in the hospital for a hip surgery that never would have been needed if she did not have to use a walker and had not been taken off pain medication! If her pain had been controlled, my mother might still be alive.

That’s why it angers me that our government is denying medication to patients that benefit from them. How in America can our lawmakers let this happen? I’ve written so many letters. I don’t know who else to contact or what else I can do to help all the people who have been brutally denied pain relief and subjected to humiliating and degrading treatment. Please if there is anything I can do to help stop this neglect, I’m all in.

I just want to let everyone who reads this to know that I feel for each and every one of you who is suffering, and I hope this ends soon. God bless you all.

Sheila Ramsey lives in Ohio. Her mother, Janet Dixon, died last year at the age of 69.

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

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

An Open Letter to All the Doctors Who Missed My EDS

By Crystal Lindell, Columnist

I hate you. I actually hate you.

Well, maybe not all of you.

But most of you, yes I hate. Actually, hate is too nice word. I detest you. I loathe you. I have venom in my heart for you. I hope your favorite show gets cancelled after a cliff hanger. I hope your air conditioner breaks in your car in July. I hope your crush never likes any of your Instagram photos. I hope every single time you go through the Taco Bell drive thru, they mess up your order. And I hope your phone screen cracks, your laptop crashes and you lose everything you ever saved.

I was recently diagnosed with Hypermobile Ehlers Danlos syndrome (hEDS), a connective tissue disorder that not only explains why my ribs always feel broken, but also why I’m always covered in unexplained bruises, why I sprain my ankles too often, why my vision changed for no reason, why my skin is baby soft, and why I crave salt.

And so many doctors missed it. And I can’t get it out of my head.

Like the doctor at Loyola who told me to stop coming to see him because there was nothing else he could do about my pain.

And the other doctor at Loyola who looked right at me while I was sitting on the exam table in just a paper-thin gown and said, “Well there are two options. You either woke up with a completely unexplainable pain, or you’re a great actress.”

I was so caught off guard that I didn’t even realize he was accusing me of trying to get drugs for like a full 30 seconds.

I also hate literally every single doctor at the Mayo Clinic that missed this crap. You know how easy it is to do an initial test for hEDS?

Doctor: "Can you bend your thumb to your wrist?"

Patient: "Yes."

Doctor: "Yeah, you probably have it. Let’s do a full evaluation."

IT’S THAT EASY!!!

The Mayo Clinic missed it because they were obsessed with me going to their rehab clinic and getting off opioids, despite the fact that it wasn’t covered by my insurance and that they required a $35,000 upfront payment.

So yes, I hate all of you.

I also hate every single chiropractor I ever saw. Seriously, all you guys do is see people in pain, and it never crosses your mind to evaluate for EDS? Why are you not asking every single patient who walks through your doors if they can touch their thumb to their wrist? What is wrong with you?

Not to mention the fact that chiropractors have to be super careful with EDS patients, if they treat them at all, because things can dislocate and all that. It’s irresponsible of you not to be evaluating every single patient for EDS.

I also hate the pain specialist who berated me for not wanting a spinal cord stimulator. If he had evaluated me for EDS, he would have known that a spinal cord stimulator would have probably been a horrible idea for me. Like chiropractors, all pain specialists do is see people in pain. They should be evaluating every single patient they see for EDS too! 

The whole thing is so infuriating and frustrating. I sincerely wish I could go back to every single doctor I have seen over the last five years and personally tell all of them how much I hate them. And then I wish I could tell all of them to freaking check people for EDS. But I can’t do that. All I can do is write this letter and then try to move forward with my new life and my new diagnosis.

But if you’re a pain patient and you can touch your thumb to your wrist, get checked for EDS. Seriously.

And if you’re a doctor, do better.

Crystal Lindell is a journalist who lives in Illinois. She eats too much Taco Bell, drinks too much espresso, and spends too much time looking for the perfect pink lipstick. She has hypermobile EDS. 

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.

Living in Denial About the Overdose Crisis

By Ann Marie Gaudon, Columnist

Most of us know that denial of reality exists, but why is this so? How can humans with the ability to consider, evaluate, analyze and resolve complex problems ignore the facts? Even when ignoring the truth might lead to disastrous results?

Conceived by Sigmund Freud as a defense mechanism (to “defend” us against that which we do not want to feel), denial has been a concept for many decades. To over-simplify the premise, it’s a belief that something is either true or false when the facts say otherwise. Why would we do this? It’s because people experience a broad range of powerful emotions and intentions, such as greed, pride, revenge, fear, desire and a need for status – just to name a few. The have a strong influence over our ability to interpret facts.

When the Canadian government introduced the 2017 Canadian Guideline for Opioid Therapy, the creators were in denial. They ignored medical facts about chronic pain and turned pain sufferers into sacrificial lambs for people abusing illicit opioids. Patients and doctors tried to tell the truth but were not allowed a seat at the table with the so-called “experts.”

Chronic pain patients have never, ever, had their pain needs met and now they fare much worse. They are in more pain and experience more death and disability due to forced tapering and suicide.

Deniers yell loud and long that opioid pain medications are not effective, dangerous, addictive and will kill you in the end. Except that the evidence does not support that. Those with the worst pain have necessarily taken opioid medications to cope. It was their strongest weapon and were usually taken without danger, addiction or death. Opioids gave them effective pain relief that helped them regain function in everyday life.  Deniers will neither believe nor admit to this.

Let’s take a look at some of the strong influences which spur deniers to ignore the facts. We can see through many interviews and articles that McMaster University’s chosen group for creating the Canadian guideline enjoyed inflated reputations as “progressive thought leaders” who were “experts in pain management.” Add in the prestige and desire for status that comes from speaking engagements, media interviews, and more committees to participate in. Imagine the pride and prestige from conducting more studies (despite knowing little about the study area), and let’s not forget the enormous sums of monies paid to them by our government.

Greed, desire and a need for status can easily veto reality. So can feelings of morality and “doing the right thing” for people, while living under the fictitious perception that they are making positive inroads into addiction and overdose deaths while saving chronic pain patients from themselves.

In the real world, what has been the impact of the guideline on addiction? Nothing.

What has been the impact on pain patients? Devastation.

Most people can’t seem to figure out why the very same dreadful outcomes keep happening until they are knee-deep in it. Health Canada said this week that over 4,000 Canadians died from drug overdoses in 2017, the most ever. Most of those deaths – 72 percent – were caused by illicit fentanyl, not prescription pain medication.

Jordan Westfall, President of the Canadian Association of People Who Use Drugs, was bang on when he wrote in the Huffington Post that “it should shame this country to no end that our federal government is still afraid to see this epidemic for what it is in reality… What’s killing people is drug overdose and an apathetic government.”

May I add that what has never been killing people are chronic pain patients and their medications. Remorse and shame are powerful motivators for living in denial. Deniers continue to believe that punishing patients will somehow decrease the alarming rate of overdose deaths.

Chronic pain patients have always known the emperor has no clothes. It is a fact that all over North America prescriptions for opioids continue to go down, while overdose deaths continue to go up.  Does this suggest a statistically significant relationship between prescription analgesics and overdose deaths?  Yet the deniers continue with the same old agenda, despite the disastrous situation they have created.

There is an annoying little fact about denial. It doesn’t work in the long-term. Reality always wins out and when that happens, the next step for the deniers will be to place misdirected blame onto someone else. Count on it. It’s already happening. Doctors put the blame on the guideline’s creators and the creators reply, “No, no, no…it’s the doctors who have misunderstood the guideline.”

Here’s a message to the Canadian government and to the plethora of advisory groups, committees, response teams, et cetera and ad nauseam that are funded with taxpayers’ money to deny the facts:

When you are consistently creating the same disastrous outcome over and over again, you are in denial. And if this shameful situation continues, it will only lead to more suffering and deaths.

Ann Marie Gaudon is a registered social worker and psychotherapist in the Waterloo region of Ontario, Canada with a specialty in chronic pain management.  She has been a chronic pain patient for 33 years and works part-time as her health allows. For more information about Ann Marie's counseling services, visit her website.

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

4 Alternative Therapies That Help Lower Pain Levels

By Barby Ingle, Columnist

This is the 11th month of my series on alternative therapies for chronic pain management. As I have stressed month after month, each of us is different, even if we are living with the same diseases. No one treatment works for everyone. We must find creative and effective ways to get our pain levels lower.

This month I am shining a spotlight on four treatments that may help you or your loved one in chronic pain: Quell, radiofrequency ablations, reflexology and sonopuncture, also known as sound therapy. I have tried all four of these treatments with varying degrees of success.

Quell

Quell is a wearable medical device that uses electric nerve stimulation to deliver relief from chronic pain. I have tried this device and passed it on to some of my friends with back, arthritis, nerve, leg and foot pain. For me, the relief was not as significant as I had hoped, but I have a friend who has used it daily for a year and swears that it helps her leg pain.

NeuroMetrix, the maker of Quell, designed the device to be worn on the upper calf muscle. It was small enough to wear under my sweatpants and not too big or bulky to get in the way. The device sends neural pulses through the central nervous system to the brain to trigger the body’s own pain blockers. It has a variety of stimulation patterns and sleep modes, and the intensity of therapy can be adjusted through an app.

If you have tried a TENS unit or Calmare and gotten some relief, this might be a successful tool to help you manage your pain. A Quell starter kit costs $249. Each unit comes with the device, leg band, two electrodes and charging cords. You have to replace the electrodes about every two weeks with normal use, but the battery is rechargeable.

I believe Quell is an option that is worth looking into and they have a 60-day moneyback guarantee if it doesn’t help you.

image courtesy neurometrix

Radiofrequency Ablation

Radiofrequency ablation (RFA) uses heat to stop the transmission of pain. Radiofrequency waves “ablate” or burn the nerve that is causing the pain. The nerve stops sending pain signals until it regrows and heals from the ablation. RFA is most commonly used to treat chronic pain caused by arthritis and peripheral nerve pain.

I had RFA procedures 36 times from 2005 to 2008. It never took my pain away but did lower my pain levels and helped take the edge off. The doctor performed them on the ganglion nerve bundle in my neck. My insurance covered the procedures and it was helpful in keeping the need for high dose pain medications down.

RFA procedures are typically done in an outpatient setting under local anesthetics or conscious sedation anesthesia. The procedure is done under guidance imaging, like a CT scan or by ultrasound machine, by an interventional pain specialist.

RFA is said to help in treating the desired nerve without causing significant collateral damage to the tissue around where the ablation is performed. Still, a patient should take precautions and understand that the ablation can cause trauma or injury to the body, and conditions such as CRPS or arachnoiditis can be exacerbated long-term with this treatment.

When I was having RFA, it was one of the only options I had access to. Once less invasive options became available to me, I opted to stop these and nerve blocks all together.

Reflexology

Reflexology involves the application of pressure to the feet and hands with thumb, finger, and hand techniques. Reflexology is very relaxing and calming for me but there is no consensus among reflexologists about how it works, and some technicians are better at it than others.

Practitioners believe that there are specific areas in the hands and feet that correspond with organs in the “zones” of the body. There are five zones on each half of the body that reflexologists work on. In theory, they help stimulate blood flow and better blood flow leads to better working organs and muscles

The research on reflexology is skimpy and it has not been proven as an effective treatment for any medical condition.  It’s more of an approach to health lifestyle living, which can be of benefit to pain patients. This can help lower blood pressure and relax a pained body by taking the edge off.

I can say reflexology did seem to help with my constipation issues, but I was doing it while taking OTC and prescription strength medications, as well as stretching and stomach massages.

Sonopuncture

Sonopuncture is also known as vibrational or sound therapy. The idea behind it is similar to that of acupuncture, although instead of needles they use sound waves. Sonopuncture practitioners believe that sound waves stimulate the body into healing.

Sonopuncture was recently highlighted on an episode of “Keeping Up with the Kardashians” when Kendall Jenner was going through some anxiety challenges. I have used sound therapy myself to help with the stress of living with chronic pain and find it relaxing and mentally therapeutic.

Typically, the patient lays down in a comfortable position on the floor or a massage table. The practitioner will used tools like a tuning fork, glass bowls, chimes, metal or electronic devices that emit harmonic sounds or vibrations on acupressure points for about a minute each.

This is a noninvasive therapy and is suitable for all ages. Since no needles are involved, it could be seen as an alternative to acupuncture. With one in four patients afraid of needles, this could be a great way to calm your nerves and mind to help manage the challenges of living with chronic pain.

If you are considering any of these alternative treatments, I encourage you to first talk with a medical professional who is familiar with your past and present care and can help you discover what would be appropriate for you.

Barby Ingle lives with reflex sympathetic dystrophy (RSD), migralepsy and endometriosis. Barby is a chronic pain educator, patient advocate, and president of the International Pain Foundation. She is also a motivational speaker and best-selling author on pain topics.

More information about Barby can be found at her website. 

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

Doctor Shopping Has Always Been Rare

By Roger Chriss, Columnist

A commonly cited factor in the opioid crisis is "doctor shopping" -- the act of seeing multiple physicians in order to get an opioid prescription without medical justification. States like Indiana are passing prescribing laws with the specific goal of preventing doctor shopping in an effort to address the opioid crisis.

However, doctor shopping has not at any time in the past decade been a statistically significant factor in the opioid crisis.  The National Institute of Drug Abuse tells us that only one out of every 143 patients who received a prescription for an opioid painkiller in 2008 obtained prescriptions from multiple physicians "in a pattern that suggests misuse or abuse of the drugs." That’s a rate of about 0.7 percent.

The importance of doctor shopping over the last decade was not because of frequency -- it has more to do with quantity. Research shows that the 0.7% of people who doctor-shopped were buying about 2 percent of the prescriptions for opioid medications, constituting about 4% of the amount dispensed.

Moreover, these doctor-shoppers tended to be young, to pay in cash, and to see five or six prescribers in a short period of time, so they are easily identifiable and can be thwarted with prescription drug monitoring programs (PDMP’s).

Diversion prevention had long been seen as important. Back in 1999, the Drug Enforcement Administration published “Don’t Be Scammed by a Drug Abuser,” which included advice to doctors and pharmacists on how to recognize drug abusers and prevent doctor-shopping. And states like Washington specifically list doctor shopping among the indicators of opioid addiction in prescribing guidelines, making recognition and intervention key goals for prescribers. 

These efforts have paid off. A study in the journal Substance Abuse found that the number of prescriptions diverted fell from approximately 4.30 million (1.75% of all prescriptions) in 2008 to approximately 3.37 million (1.27% of all prescriptions) in 2012. The study concluded that “diversion control efforts have likely been effective.”

Similarly, Pharmacy Times reported a 40% decrease in doctor shopping in West Virginia between 2014 and 2015, thanks in part to efforts by that state’s Board of Pharmacy Controlled Substance Monitoring Program.

The Inspector General of the Department of Health and Human Services found in 2017 that among 43.6 million Medicare beneficiaries, only 22,308 “appeared to be doctor shopping.” That’s a minuscule rate of 0.05 percent.

“You have this narrative that there are these opioid shoppers and rogue prescribers and they’re driving the epidemic, and in fact the data suggests otherwise,” says Dr. Caleb Alexander, who co-authored a 2017 study in the journal Addiction.

"The study found that of those prescribed opioids in 2015, doctor shoppers were exceedingly rare, making up less than one percent of prescription opioid users,” Alexander told Mother Jones.

Doctor shopping is still a problem in other contexts. Opioids are not the only class of medication that people seek to obtain illicitly for a variety of reasons, from hypochondriasis to malingering. PDMPs and other law enforcement efforts have a useful role to play in addressing these issues, and the opioid crisis requires ongoing efforts to prevent drug theft and diversion at all levels of the supply chain.

But claims that doctor shopping is a significant factor in the opioid crisis are mistaken. Doctor shopping was not significant in 2008, and measures to reduce diversion have succeeded, making doctor shopping in 2018 that much rarer.

Roger Chriss lives with Ehlers Danlos syndrome and is a proud member of the Ehlers-Danlos Society. Roger is a technical consultant in Washington state, where he specializes in mathematics and research.

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

How I Started Telling People I Have EDS

By Crystal Lindell, Columnist

One of the first people I told about my new Hypermobile Ehlers-Danlos syndrome (hEDS) diagnosis was a local politician.

I was still trying to get a feel for how the letters EDS tasted on my lips. How they felt in my breath. How people would react when I said them. And truth be told, this was when doctors were telling me I probably had it, but before I was officially diagnosed — that came later.

He didn’t know he was among the first people I told — that he was a test case. But there we were, at a local Democrats meeting and he asked me about medical marijuana, and I decided to go for it. 

“I actually have EDS,” I said. “My thumb touches my wrist, want to see? Yes, marijuana should be legalized. No, it won’t help everyone.”

He had the response most people seem to have.

“Maybe it will get better?”

“It won’t get better,” I told him.

“Yeah, but maybe it will! Once, I was sick and then I got better. So maybe you will get better.”

“It won’t.”

I get it. Nobody wants to really understand that being born in the wrong family is enough to sentence you to a lifetime of weak ankles and debilitating pain. It’s hard to understand that. It’s hard to accept that. It’s a lot easier to believe someone might get better.

It’s been hard for me to accept that. And harder still to say it out loud.

I have found though that it feels easier to lay the news on random acquaintances. The Tinder guy I met once. The woman who expertly bleaches my hair at the over-priced salon. The clerk at Walgreen's ringing up my pain medications.

There’s something to be said for telling random strangers something so overwhelming. It greatly reduces the consequences of your words — and of their reaction.

My initial instinct was to tell the people closest to me, my inner circle, first. But that quickly become completely overwhelming. Those people care way too much about me. They take it way too hard. It cuts too deep.

No, strangers are much better. They are morbidly impressed with my thumb to wrist trick. They are able to distance themselves from the depressing, long-term aspects of the diagnosis and ask horrifically, wonderful mundane questions like, “What does EDS stand for?”

And they never stop to think about what it might mean for my future. That’s my favorite part. Because the future looks very scary right now. And I need to do my best to stay in the present.

I have forced myself to pepper in the tougher conversations with the people who care about me. The late-nights over tears with my best friend wondering what this might mean for my future. Asking things like, what if I can never kids? And even if I can, do I want to risk passing it on to them?

Will I need assisted care sooner than most? How will I ever explain my health to future lovers? Why did it take so excessively long to get the diagnosis? How much of my life was wasted waiting for it? What could have been different if only I had known sooner? Will my siblings need to be evaluated? And what happens if they have it too?

All the things that fill me with grief and despair if I let them.

But strangers never ask questions like that. And even if they do, they don’t actually care about the answers that much. And I love that about them.

Eventually, hopefully, it will just become one more things about me. I’m blonde, I don’t like Trump, I love Burn Notice, I eat too much Taco Bell, and I have hEDS. It’s part of who I am, but not the whole part, or even the most important part. Just another casual fact in my Instagram bio next to things like, “I like lipstick.”

And no, I won’t actually ever getter better, but eventually, hopefully, I’ll get better at having hEDS and telling people about it.

Crystal Lindell is a journalist who lives in Illinois. She eats too much Taco Bell, drinks too much espresso, and spends too much time looking for the perfect pink lipstick. She has hypermobile EDS. 

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 Nightmare Experience With Surgery

By Rochelle Odell, Columnist

I have been warning my “healthy” family and friends that the opioid epidemic and the backlash against prescription opioids would affect them at some point. My recent nightmare of a surgery may prove that the time may now be at hand. 

On February 2, I underwent what normally would be minor surgery to remove a catheter -- called a portacath -- that had become dislodged. For patients with Complex Regional Pain Syndrome (CRPS), there is no such thing as a minor procedure and my experience became a prime example of what could go wrong.

My friend Debbie drove me to the hospital where the surgery was performed. I have undergone over 40 procedures for CRPS and I always become apprehensive, as any patient facing surgery should be. I told Debbie I did not have a warm toasty feeling about the surgery. I was frightened, a feeling I don't usually experience. But this time I did.

Before I was taken back to pre-op, Debbie asked me if I would like to pray. Thankful for the thought, I responded yes. It did not alleviate the feeling of dread nagging at me, but I hoped God would protect me.

Once in pre-op, the nurse went over my extensive allergy list. Believe me, it's long. I am allergic to almost all antibiotics, including penicillin, along with some opioids like Demerol and methadone, as well as aspirin and NSAID's. Betadine causes blisters and a horrible rash. I’m also allergic to most medical tape, including cloth, plastic, silk and paper tapes. The only one I can tolerate is Hypafix. It's a soft adhesive that allows the skin to breathe. I was very vocal about that.

The nurse asked what kind of surgery I was about to undergo and why. I told her it was because I don't have any good veins, never have, and that a catheter was a necessary evil. Without one, if I were to pass out or become very ill, dying could be a real possibility.

I told her she would only got two tries for the IV line I would need for surgery. I am not a pin cushion and multiple needle pricks could cause a major pain flare. She started the IV on the second try.

The surgeon and anesthesiologist then came to see me. I explained how nervous I was and that I honestly was very close to walking out. I should have done that. I could tell the surgeon had no clue what CRPS was or how to treat me post-op. That is not unusual, a lot of doctors have no clue what it is, and that extra steps are needed to keep a major pain flare from happening.

Even the anesthesiologist seemed clueless about CRPS. I thought that odd, since anesthesiologists are often pain management physicians. He kept telling me don't worry, once in the operating room I would be out soon.

Four hours later I was taken to the operating room. I told the anesthesiologist that I forgot to add fentanyl to my allergy list. It gives me a smothering feeling and can't breathe. I also told him I wanted an LMA mask, because being intubated causes my asthma to flare. He told me he would use the mask, but he wanted to use fentanyl and that if I stopped breathing he would intubate me.

What is wrong with this explanation? Use something other than fentanyl and you won't have to intubate me. I also asked the surgeon to place me on IV antibiotics, as I have a long history of staph and MRSA infections.

Upon coming out of anesthesia, my throat was killing me. I knew he must have intubated me and used a drug I didn't want. The pain was excruciating. I was given small doses of Dilaudid and oxycodone, which did absolutely zip for me.

They also gave me IV Tylenol. Really, Tylenol post-op in a CRPS patient? The recovery room nurse was trying to console me as I was in tears.  Any nurse I dealt with said they were trying to make sure I didn't die of an opioid overdose. That took the cake, the minuscule doses I received were obviously not working, so an opioid overdose certainly would not happen.

One nurse told me my pain was emotional pain. I should have screamed at her to get away from me, but I was in so much pain I couldn't think clearly. I was kept for observation overnight, which brought more problems and the realization that the very thing I warned my healthy family and friends about was indeed at hand.

What kind of pain control do patients get now after surgery?  My surgeon was responsible for ordering all my meds, but how is a man who has no clue what CRPS is going to manage my pain? A man I had only seen one time before the surgery.

My RN was very sweet, but she too was stating what I think must be the hospital's policy. They do not want to provide opioid pain management.  Everyone is so convinced the opioid epidemic was and is caused by prescription opioid medication. It dawned on me, ignorance is alive and well and it must be contagious.

My ordeal continued to worsen. I looked at my surgery sites. Not only were my upper chest and right arm covered in the tell-tale orange color from Betadine, but there was medical tape. A big painful and very itchy rash had developed.

My skin was driving me nuts. I asked the nurse to remove the tape and use non-stick pads and Hypafix, but she refused. Didn't anyone read my allergy list? Why ask for one if you are going to ignore it? The surgeon ordered Benadryl cream for my arm. It helped a little and I did get one injection of IV Benadryl, but that was it. I received less medication in the hospital than I was taking at home.

After a long painful night, I told the nurse I would refuse to see the surgeon. Anyone who causes a patient as much pain as he did is one I will not see again. The nurse said he had to see me in order to release me. I told her to tell him to have a different doctor release me, as I did not want to see him. I was livid. The morning I was released I removed the tape, as I could no longer tolerate it. She helped me cover the area with sterile gauze.

As soon as I got home I cleaned the surgery area thoroughly and made an occlusive dressing over the two surgical sites. The next morning my whole upper right chest was covered with tiny blisters and a nasty looking rash. My friend took pictures for me.  The asthma flare I was afraid of was in full swing and I was running a temperature of 102.  I could barely breath and my pain was completely out of control.

I had a temperature for three weeks, and six weeks later I am still coughing up yellow gunk. That could have easily been prevented, but what do I know, I am just the patient.  Because I refused to see the surgeon for a post-op checkup, my primary care provider sent me a letter informing me I was trying to direct my care and was argumentative. He would only treat me for 30 more days and I needed to find a new primary care physician.

In the past I might have been upset with a letter like that, but since this opioid epidemic has affected me so negatively, I simply do not want to be seen by any physician who doesn't try to understand how sick I am. I was in so much pain.  Wouldn't you try to direct your care at that point?

My ordeal has not ended. As of this writing, the whole port area and catheter tubing are swollen and look infected. Have I gotten it checked yet? Nope. I have literally been frozen in place by fear, a fear I have never experienced before. I know this will require more surgery to remove and replace the portacath. Just thinking about it scares me.

All of this could have been avoided if my allergy list had been read, if there had been adequate pain management, and if IV antibiotics had been started. If this is the future of medical care, I may reconsider seeing any doctor. It just isn't worth the stress and pain.

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

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

Prescription Opioids Rarely Lead to Heroin Use

By Roger Chriss, Columnist

A recent Politico column by three anti-opioid activists asserts that “opioid use disorder is common in chronic pain patients”  and that the nation’s overdose crisis “stems largely from the overprescribing of opioids.”

Andrew Kolodny, MD, Jane Ballantyne, MD, and Gary Franklin, MD --  who are the founder, president, and vice-president, respectively, of Physicians for Responsible Opioid Prescribing (PROP) – also wrote that “many individuals become addicted to prescription opioids through medical or non-medical use, and then switch to heroin after becoming addicted."

This claim is an oversimplification of the tragedy that is heroin addiction. It both ignores the complex trajectory of drug use that culminates in heroin and omits the known risk factors of the people who suffer from heroin addiction. It also runs counter to the known data about various forms of opioid addiction, which clearly shows that most people on opioid therapy do not develop problems with misuse, abuse or addiction, and rarely move on to heroin.

The National Institute on Drug Abuse (NIDA) estimates that about 10 percent of patients prescribed opioids develop an opioid use disorder. And only about 5 percent of those who misuse their medication ever make the transition to heroin.

Further, the number of people addicted to prescription opioids -- about two million -- has been stable for over five years, while rates of heroin use have been rising, suggesting there is not a strong corelation between the two.

From 2002 to 2016, the number of Americans using heroin nearly tripled, from 214,000 to 626,000. Overdose deaths involving heroin also soared during that period.

The reasons behind this are complex and not fully understood. One theory is that heroin became more popular when prescription opioids became harder to obtain and abuse. According to a study by the RAND Corporation, the introduction of abuse-deterrent OxyContin in 2010 was a major driver in the shift to heroin.

Heroin use is also strongly associated with mental illness and childhood trauma. Studies have found that 75 percent of people with heroin addiction have another mental illness, with about half showing signs of psychiatric problems or post-traumatic stress disorder (PTSD) before age 16. At least half were abused or neglected as children, with especially high rates of sexual abuse.

In addition, it is well established in psychiatry that certain mental health disorders – such as borderline personality and bipolar disorder -- have a significantly increased risk of substance use.

Thus, heroin use and addiction is far more complex than just a result of opioid misprespcribing. Most people placed on opioid therapy do not misuse their medication, and the few who do become addicted rarely transition to heroin. Recent studies also suggest that more people are starting on heroin without prior exposure to other opioids.

Heroin addiction is most often the tragic outcome of a shattered childhood or mental illness, and not simply a result of medication exposure. To claim that heroin addiction stems largely from pain management is a disservice to both addicts and pain patients, and will only further the suffering of both groups by diverting attention from the real issues.

Roger Chriss lives with Ehlers Danlos syndrome and is a proud member of the Ehlers-Danlos Society. Roger is a technical consultant in Washington state, where he specializes in mathematics and research.

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

My Arachnoiditis Family

By Elaine Ballard, Guest Columnist

I live in the rural county of Somerset in England, UK. At the age of 22, I had a sporting accident which eventually left me 80 percent disabled and unable to lead a normal life. 

The accident caused several crushed discs in my spine and a great deal of nerve damage. Over the years multi-level disc degeneration set in, as well as osteoarthritis. I am unable to use a wheelchair, as bulging discs prevent me from sitting without severe pain. I am now 73.

ELAINE BALLARD

Since 1994, I have been confined to lying on a bed in my living room and only leave home to keep hospital appointments. I travel by stretcher ambulance.

Just over two years ago I had an MRI scan which showed I had Adhesive Arachnoiditis (AA) and my life changed drastically yet again. 

Arachnoiditis is listed as a rare neurological condition, but in fact many thousands of people all over the world have been diagnosed with it. There are also thousands of other people who have the same symptoms, but as yet, no diagnosis.

It is difficult for patients to get diagnosed as doctors are not trained to recognize this disease and often fail to even recognize the symptoms.

Arachnoiditis results from severe inflammation of the arachnoid membrane that surrounds the nerves of the spinal cord. It may cause stinging and burning pain, as well as muscle cramps, spasms, and uncontrollable twitching. The most common symptom is severe to unbearable neurological pain, especially to the nerves connecting to the lower back, legs and feet. This can lead to tingling, numbness, weakness and severe pain in the legs and feet.

Other symptoms include sensations that feel like insects crawling on the skin or water trickling down the legs. It can also affect the bladder, bowel and sexual function. Unfortunately for some, it may also result in paralysis.

As this disease progresses, the symptoms can become more severe or even permanent. Most people with Arachnoiditis are eventually unable to work and suffer significant disability because they are in constant pain. Pain is the most dominant factor and it is both chronic and acute. As the disease progresses, it can be relentless and unbearable and sadly suicide becomes an option.

Inflammation of the arachnoid membrane can lead to the formation of scar tissue, which may cause the spinal nerves to clump together and eventually adhere to the lining wall of the dura, the middle layer of the spine. The disease can then progress to Adhesive Arachnoiditis.

What Causes Arachnoiditis

There are a few different causes of Arachnoiditis. In the 1970's a dye used in myelograms was injected during spinal procedures directly into the area surrounding the spinal cord and nerves. The dye was too toxic for these delicate parts of the spine and was blamed for causing Arachnoiditis. This dye continues to be used in some parts of the world.

Bacterial infections and viruses in the spine can also lead to Arachnoiditis. So can complications from spinal surgery and invasive spinal procedures such as epidural steroid injections.

There is no cure for Arachnoiditis and there is little effective pain relief. This is a disease or condition for life. Opioids are offered by doctors, but are not specific to reducing neurological pain of this nature.

It is very sad and cruel that opioids are being clamped down in America and that Arachnoiditis patients are being classed together with people who seek drugs for recreational purposes. We are not drug seekers but desperate victims crying out for something that will stop this relentless and overwhelming neurological pain.

The Facebook support group Arachnoiditis Together We Fight has been an important part of my education in understanding this disease. I am thankful to say it has become more of a family, where members can come in and gradually feel at home while we bring education, support and encouragement. This family atmosphere and great support has saved many lives, as people first arrive feeling suicidal and lost in a medical world that will not help them.

That is why I wrote this poem to show people how important support groups can be and to bring more attention to this rare but life changing disease.

"The Family"

By Elaine Ballard

Lonely, fearfully I knock at the door
Arac greets me, a smile, so kind
I want to die, eyes keep to the floor
"Welcome" she says, but what will I find?

"Welcome" repeated again and again
"Good to have you!" Are you kidding?  
"Family" really can it be true? 
Lost, lonely, rejected... what you too? 

I tell my story, they will never believe
"We understand, you're not alone"
Tears trickle down, I cannot believe
We are bound together by this dreaded disease

Files, inflammation, medication
Head's in a spin, where do I begin?  
Then a hand upon my shoulder
Guides me to those precious folders

Questions answered, hope is rising
Found some friends, pain subsiding
Flares still come but under control
No longer afraid nor out in the cold

We need each other, your pain is mine  
Strength in unity, love is the sign
Moving forward we are free
To Fight Together as one FAMILY

Elaine Ballard has written a book about Adhesive Arachnoiditis and how her Christian faith helped her through many difficult flares and times. It is called “The Furnace of Fire” and is available on Amazon. Click on the book's cover to see price and ordering information.

Pain News Network invites other readers to share their stories (and poems) with us. Send them to editor@painnewsnetwork.org.

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

Finding Out I Have EDS

By Crystal Lindell, Columnist

It turns out pain has been running through my veins all along. It has been a part of my bones since the day I was born. I just didn’t know it.

I have recently been diagnosed with something called hypermobile EDS, which is a subtype of Ehlers-Danlos syndrome. Basically, my connective tissue is weaker than it should be.

It explains why I spent the last five years feeling like the bones in my rib cage were cracked. It explains why my legs and arms are often painted blue and purple and shades of Army green with bruises from injuries I have no memory of. And it explains why my ankles gave way so often over the years that I ended up with an entire dresser drawer full of beige ankle wraps.

It also explains why everyone who ever loved me would describe me as clumsy. And why I got tendonitis at such a relatively young age. It explains my vision changes and my “bad veins” and my soft skin.  

Readers have privately messaged me many times to get checked for EDS, but I thought it was too rare. I thought my doctors would think I was stupid or crazy for asking about it. And I didn’t think it ran in my family.

I was devastatingly wrong about all those of things.

And at every crossroad over the last few weeks, at every opportunity to find out that maybe I was overreacting, my worst fears were confirmed.

First by the osteopath, who asked if I could touch my thumb to my wrist, and when I showed her I could, said plainly, “Oh yeah, you could definitely have EDS.”

Then by my cousin, who herself has suffered from unexplained pain and health issues for years. When I asked if her doctors had ever thought she might have EDS, she replied, simply, "Yes, they have."

Next came my mom, who I tried to avoid involving in all this for as long as possible, because I knew it would be harder on her than it was on me to find out I might have EDS. As she sat on the couch across from me, she scrolled through the list of signs and symptoms on her phone and then abruptly stopped.

“I think my dad had this,” she said.

A revelation. An epiphany of the worst kind.

Her dad. The man who died when I was 3. The man everyone always said spent his life dealing with unexplained pain. The man I was haphazardly compared to whenever I popped pills. The man who I had no memory of. It was him. He was the link. 

And then the dots just started connecting themselves. Like when you watch an eight-part Netflix show and it takes the characters until the very last episode to realize that the killer was in the house all along and you’re screaming at the TV to try to tell them, but they just don’t see it.

Then, finally, they see it. 

It turns out his mom likely had EDS too. My mom’s grandma, and my great-grandma, Hazel. The family lore is that she was diagnosed with rheumatoid arthritis at 26 and spent most of her life miserable and in horrible pain. I have now discovered that her RA was probably, at the very least, an incomplete diagnosis.

When I talked to her son, my great-uncle, I expected him to prove me wrong. To say something that countered my suspicions. But he did exactly the opposite. The last year of her life the doctors had told him that her body was like a bunch of bricks and the cement holding them together was deteriorating. EDS explained with a construction metaphor.

Even more heartbreaking was that he said all they ever gave her for her pain was aspirin. That’s it. Aspirin. And it did not help.

I had been hoping -- since it was so long ago --- that they were more generous with the pain medications at the time. That they had gladly given her all the morphine she wanted. But, as with so many things lately, the opposite of what I believed was actually true.

I told my pain specialist at the university hospital in Wisconsin about all this. And until the very end I hoped he would prove me wrong. That he would accuse me of being hysterical. But instead, he said simply, “Ehlers-Danlos Syndrome is a possibility, based on your reports and my prior examination. Best bet would be for you to come in for a visit.”

And that’s when I knew. That was all I needed to finally understand that the killer was in the house the whole time.

“Ehlers-Danlos Syndrome is a possibility.”

“Ehlers-Danlos Syndrome is a possibility.”

“Ehlers-Danlos Syndrome is a possibility.”

It played over and over and over in my head. I let myself think for a second. There it is. Ehlers-Danlos Syndrome is a possibility.

I scheduled a visit for March 15. And this week, after spending about 45 minutes bending me like a Gumby doll, he confirmed it. I have hypermobile EDS – or hEDS for short.

I am fairly certain that all of those wonderful, strong people out there who live with EDS will know how devastated I am by all this. And how sad it makes me. I cannot talk myself out of the grief I have been feeling. Because now, not only will I likely never get better, the odds are high that I will get worse. There is no cure, only treatments that manage the symptoms. And physical therapy to prevent others.

All I can think about is the doctor at Loyola from the very beginning. The one I first saw with shooting pain in my wrists five years ago. The one I went back to a few months later hoping to find answers for the new pain in my ribs.

The one who looked right at me and said, “Please stop coming in. There is nothing I can do to help you.”

The one who could have found this so easily, if only he had taken the time to look for it. The one who pushed me into piles of medical bills and doctor visits and nights with unexplained pain because he thought I was making it all up. Or at the very least, overreacting.

I want to go back to his office and show him what I learned. I want to yell in his face, “IT’S EDS! I WASN’T BEING CRAZY! I WAS IN PAIN!! I NEEDED YOUR HELP!!!”

And then I want to cry. Again. Because crying seems like the only appropriate response to all of this right now.

Crystal Lindell is a journalist who lives in Illinois. She eats too much Taco Bell, drinks too much espresso, and spends too much time looking for the perfect pink lipstick. She has hypermobile EDS. 

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.

Opioid Hysteria Has Gone Too Far

By Lisa Kehrberg, MD, Guest Columnist

I’m a 43-year-old physician who retired due to illness at the age of 39. I have a rare genetic disease called acute intermittent porphyria (AIP), an extremely painful and disabling condition.

Due to an enzyme deficiency, AIP causes toxins to buildup in the liver. The symptoms of porphyria are primarily neurological with the most notable being abdominal pain -- a burning sensation that is almost unbearable. The pain is similar to what I’d imagine it would feel like to have a blowtorch placed against my stomach and back.

Acute porphyria also causes peripheral neuropathy in the hands and feet. Along with the pain comes severe nausea, vomiting, headaches, fatigue, muscle weakness, motor neuropathy, and fluctuations in blood pressure and pulse. About 10 percent of AIP patients have a severe form of the disease referred to as “high excreter, recurrent attacks.”

Unfortunately, I am in that 10 percent.

Initially, I only had monthly attacks lasting 3-5 days, starting in my teenage years. Somehow, I managed to complete my education and training and became a physician despite that.

I was not finally diagnosed with AIP until the age of 39, when I suffered a life-threatening porphyria attack. It was almost too late for me at that point, as the attack was so severe that I was no longer able to work or do much at all. There is a one percent mortality rate during each AIP attack and I’ve had hundreds of them, so I’ve been lucky.

My older brother died unexpectedly at the age of 39. Genetic testing of autopsy samples later determined he had the same AIP gene mutation as I have. He died prior to my diagnosis and his gene mutation was discovered as I lay in a hospital bed being told my diagnosis.

LISA KEHRBERG, MD

At first, I felt such strong relief that my life was saved and sadness for my brother. But as the months passed, and I became sicker and more in pain, I started feeling a bit jealous of my brother. He was able to at least die with some dignity and is no longer suffering.

The pain that I experience is severe and the only thing effective enough to bring it down to tolerable levels is opioid medication. I’ve tried everything possible. Pain is a subjective experience and only the person experiencing it can know the severity and what helps to improve it.

I have difficulty understanding the response from some in the medical community, government, media and general public, who are so focused on “opioid addiction” that they are unable to see patients like me and empathize with us.

The media’s response has been extremely damaging. It seems people do not understand that addiction is a separate issue from pain management. Why is it that every time prescription pain medication is discussed, it's only in reference to addiction and the opioid epidemic? What about people like me who live with a life-threatening and severely painful disease? Not many reporters seem interested in that side of the story.

I have watched now as countless pain patients have taken their own lives due to discontinuation of their pain medication, often without any warning or consent. Physicians are not the problem in this. Physicians want to help patients. Physicians are being misled, brainwashed and even punished into thinking that prescription opioids usually lead to addiction.

Fortunately for patients like me, palliative care is a growing field and I’m so appreciative of my palliative care physician. I’m frightened for the future, not only for myself, but really for everyone. Pain affects everybody at some point in their lives. Whether it’s you, a family member or a friend -- pain will be there.

Everybody should be afraid of the direction where things are going. Even cancer patients at end of life are being denied appropriate pain treatments. Insurance companies are denying coverage for pain medications and getting away with it. I encourage everyone to please use common sense in this climate where the pendulum has swung too far in the wrong direction.

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

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

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

Tips for Surviving the Rising Cost of Healthcare

By Barby Ingle, Columnist

In my 20+ years as a chronic care patient, I have had over $1 million in medical bills. By the time I pass away, it may be nearing the $2 million mark for me.

Although insurance covered most of my healthcare costs, I’ve paid tens of thousands of dollars in out-of-pocket expenses and deductibles. Chronic illness can wipe you out financially. I had to sell my house to help pay the bills. Family and friends pitched in by hosting medical fundraisers for me.

This was before I realized that I was overpaying, that I could negotiate some prices, and that there were time savers and tools I could use to help keep costs down.  Here are a few tips that I use to keep my medical expenses low.

Shop around for healthcare services. Use websites like Amino, BuildMyBod or Healthcare Bluebook to find out what your out-of-pocket costs are likely to be for an x-ray, lab test or doctor’s appointment. They can also help you choose an insurance plan that will cover the treatments you are most likely to need.

Many providers have cash prices for procedures or tests that are lower than what they charge insurers. I have even paid cash to a provider, submitted the insurance claim myself and received a full refund.

Had my provider submitted the paperwork, it would have cost me more out-of-pocket and my care would have been delayed waiting for a prior authorization.

When it comes to prescriptions, check for deals, coupons and if generic medication is available. Don't be afraid to ask. Many pharmacy chains sign contracts with pharmacy benefit managers (PBMs) that bind them not to tell a patient that the cash price would be lower, unless the patient asks first. This is known as a PBM clawback and it leads many patients to abandon their scripts because they don’t think they can afford to pick up the medication. 

Pharmacies, manufacturers and coupon companies offer discount pricing that can save you significant amounts.  Walgreen's has a prescription savings club, which can provide savings from $50 to over $100 on a 90-day supply of a medication. I primarily use Walgreen's, but if another pharmacy has a lower price for something like an antibiotic, I will go to them.

I also have my doctor sign my scripts “fill as written,” which can lower the cost of brand name medications run through my insurance card. Always check on how similar the generic is to the brand name. By law they only have to be 70% of the original formulation. The fillers used in generic drugs can vary, so things like time-released medication can work differently than the brand name. It’s important to check on this when looking at how much savings you can create. You want the generic medication to work just as effectively for you.

Walk-in clinics are becoming popular for routine care appointments. By my house there is an urgent care clinic and a Walgreen's clinic that offer online check-in so that patients can avoid lengthy waits. They call or send a text to let you know you are next, so you can head down and spend less time in their waiting room with other sick people. In major cities there are health fairs that offer free or low-cost medical services to uninsured and under insured patients.

I also utilize concierge providers through a monthly subscription. Anything the primary care provider can do in his office is included in the monthly fee, which if you pay quarterly or yearly will be even lower. Sometimes I don’t even have to go see the doctor, I can teleconference with him and he can just call in a script that I will get quicker and cheaper. I save the more expensive ER visits and specialty care for real emergencies like allergic reactions, broken bones, and other life-threatening situations I have had.

My final tip is the use of health apps that allow patients to check the prices of prescriptions, get discounts, print medical records, and store emergency information on your phone for paramedics to access. I like GoodRx and Needy Meds for finding the least expensive medications nearby. And I use HealthTune’s app for mindfulness music, which is a free streaming platform that offers scientifically researched music to support your health.  

No matter what choices you make to save money, the more organized you are with your healthcare and medical records, the better your future care will be. I’d love for you to share in the comment section what tips you use to keep your healthcare costs down.

Barby Ingle lives with reflex sympathetic dystrophy (RSD), migralepsy and endometriosis. Barby is a chronic pain educator, patient advocate, and president of the International Pain Foundation. She is also a motivational speaker and best-selling author on pain topics.

More information about Barby can be found at her website. 

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

What the JAMA Opioid Study Didn’t Find

By Roger Chriss, Columnist

A recent opioid study published in the Journal Of the American Medical Association (JAMA)  evaluated pain management in patients with hip and knee osteoarthritis and low back pain.

The study by VA researcher Erin Krebs, MD, and colleagues found that “treatment with opioids was not superior to treatment with nonopioid medications for improving pain-related function over 12 months.”  

That finding was widely and erroneously reported in the news media as meaning that opioids are ineffective for all types of chronic pain.

But the most fascinating result of the study – the one not being reported -- is what wasn’t found. The 108 people in the study who took opioids for a year did not develop signs of opioid misuse, abuse or addiction, and did not develop opioid-induced hyperalgesia – a heightened sensitivity to pain.

And no one died of an overdose.

This is significant because it runs counter to commonly held beliefs in the medical profession about the risks of prescription opioids. Here are a few recent examples:

“Opioids are very addictive and their effectiveness wanes as people habituate to the medication,” Carl Noe, MD, director of a pain clinic at the University of Texas Medical Center wrote in an op/ed in The Texas Tribune.

Don Teater, MD, a family physician in North Carolina, also believes that people on long-term opioid therapy experience dose escalation, which leads to hyperalgesia. “Opioids cause permanent brain changes,” Teater told USA Today.

Krebs herself has made similar comments. "Within a few weeks or months of taking an opioid on a daily basis, your body gets used to that level of opioid, and you need more and more to get the same level of effect,” she told NPR.

But the Krebs study didn’t see any of that happen.

Krebs and colleagues closely monitored the 108 people in the opioid arm of the study, using “multiple approaches to evaluate for potential misuse, including medical record surveillance for evidence of ‘doctor-shopping’ (seeking medication from multiple physicians), diversion, substance use disorder, or death.” They also had participants complete the “Addiction Behavior Checklist” and assessed their alcohol and drug use with surveys and screening tools.

What did Krebs find in the opioid group after 12 months of treatment?

“No deaths, ‘doctor-shopping,’ diversion, or opioid use disorder diagnoses were detected,” she reported. “There were no significant differences in adverse outcomes or potential misuse measures.”

Health-related quality of life and mental health in the opioid group did not significantly differ from the non-opioid group – and their anxiety levels actually improved.  

These are observational findings in the study. They were not a part of what Krebs and colleagues were specifically trying to measure. As the study notes: “This trial did not have sufficient statistical power to estimate rates of death, opioid use disorder, or other serious harms associated with prescribed opioids.”

ERIN KREBS, MD

But they are valuable observations. They note what didn’t happen in the study. Over 100 people were put on opioid therapy for a year, and none of them showed any signs of dose escalation or opioid-induced hyperalgesia, or any evidence of opioid misuse, abuse or addiction.

Krebs told the Minneapolis Star Tribune that this “could reflect the fact that the study did not enroll patients with addiction histories, and because the VA provided close supervision to all participants during the yearlong study.”

In other words, Krebs and colleagues used an opioid prescribing protocol that achieved an admirable level of patient safety. Their approach is similar to what many pain management practices currently pursue and what the CDC and various state guidelines recommend: Risk assessment before initial prescribing and careful monitoring over time.

The Krebs study provides rare and detailed observations of what happens when people are put on long-term opioid therapy. A lot of what is claimed about dose escalation, opioid-induced hyperalgesia, and misuse or abuse didn't happen at all.

This outcome demonstrates that long-term opioid therapy can be safe and effective, and may be useful in treating other chronic conditions, from intractable neuropathies to painful genetic disorders. That’s worth reporting too, isn’t it?

Roger Chriss lives with Ehlers Danlos syndrome and is a proud member of the Ehlers-Danlos Society. Roger is a technical consultant in Washington state, where he specializes in mathematics and research.

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