chronic pain

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Narrating Medicine: What I Want You To Know About My Crohn’s Disease

Grace Herman (Courtesy)

Grace Herman (Courtesy)

Grace Herman, of Newton, was diagnosed with Crohn’s Disease at the age of 16. At first, she focused the majority of her efforts on learning to anticipate and cope with the various struggles of living with a chronic disease: the nausea and pain throughout her body, and overwhelming fatigue. Now 24, Grace focuses much of her time on maintaining an overall healthy lifestyle — she has found exercise to be a fantastic way to maintain her health, reduce her stress, and stay attuned to warning signs of illness. A 2014 graduate of McGill University, Grace is now a clinical research coordinator for the Substance Use Disorder Initiative at Massachusetts General Hospital.

Listen above to Herman and her father, John, talk with Massachusetts General Hospital psychiatrists Eugene Beresin and Steve Schlozman about living with a chronic illness.

Here, Grace offers some tips to parents and children on dealing with a chronic illness:

Don’t ‘Google It’

There is no greater jeopardy to your peace of mind than the search function on Google. This was the first thing my doctors told me and I must emphatically endorse their advice. Almost a decade has passed since my diagnosis, and still, the arrival of an unfamiliar pain or symptom tempts me to search for an answer from the most accessible, but not necessarily the most reliable, source. Often, I’ll search instead of picking up the phone to call one of my care providers. And all too often this delay in reaching out has rendered me physically sick. Left to my own devices, I have also been plagued with crushing anxiety about everything I might have. Often, it’s not the case: As one of my amazing physicians, Dr. Annah Abrams, often says, “Look for horses before zebras.”

Choose The Right Doctor

A huge part of finding security in living with a chronic disease is having the right person to assuage your inevitable fears. Parents and children should know that you have the right to take your time and decide who is the best fit. This may not necessarily be the first doctor you see, or even the doctor who makes the initial diagnosis. Try to find someone with whom your child (and you) feel safe — someone you want to talk to. At first, conversations about your medical condition may be awkward and uncomfortable; however, the right doctor will know how to handle this and begin to build a dialogue based on trust and empathy.

Even after you have found a doctor, know that the first few years following a diagnosis can be the most difficult; after all, you are trying to determine (sometimes through trial and error) which treatments are the most effective. Bolster yourselves through this time of uncertainty with the knowledge that you have the best people on your side working toward a common goal. Continue reading

Mystery Solved: Why That ‘Opioid-Induced Constipation’ Super Bowl Ad?


I imagined 100 million people all scratching their heads at the same time and saying, “Huh?”

The source of their bafflement: Why, among all the usual Super Bowl ads for cars and beers, is there a minute-long tale (watch it above) of a man who envies others — even a dog — their digestive regularity?

The voice-over describes his plight: “If you need an opioid to manage your chronic pain, you may be so constipated it feels like everyone can go…except you. Tried many things? Still struggling to find relief? You may have opioid induced constipation — OIC.”

The condition sounds straightforward enough, and the social media poop jokes were predictable enough. The mystery was: How does something that looks like a public service announcement about opioid constipation show up on the most expensive advertising real-estate around?

A skeptical friend sent over these queries: “Are there really enough people on opioids that they can justify paying for a Super Bowl commercial? Isn’t anyone on legitimate opioids in a doctor’s care and getting info about anti-constipation meds?”

First of all, yes, there are enough people on opioids. The U.S. Pain Foundation estimates on its OIC page that nearly 8 million people who are on opioids suffer from related constipation. And that estimate may well be low, said the foundation’s founder, Paul Gileno, because people don’t tend to seek care for constipation, they often just try to treat it with over-the-counter and natural remedies. The U.S. Pain Foundation is one of a half-dozen groups listed at the end of the ad as co-sponsors, and some of its funding comes from pharmaceutical companies.

Secondly, Gileno said, no, many doctors are not on top of opioid-related constipation. “We’d all love to assume it’s being take care of, but it’s really not,” he said — to the point that some patients even skip their opioid doses despite the added pain, just to try to cope with the constipation.

About three-quarters of pain management happens in primary care doctors’ offices, he said, and those typically brief visits are often so focused on alleviating pain that they do not delve into side effects. Patients may also fail to connect their pain medication with their constipation.

“Early on in my pain journey, I didn’t realize that was a side effect, and quite honestly, my primary care doctor didn’t know either, he didn’t bring it up to me,” Gileno said. “It was only when I was able to see a good pain management doctor that he knew that was a side effect.”

The point of the Super Bowl ad was to get a conversation going about this embarrassing but important aspect of pain treatment, Gileno said.

But Super Bowl conversation-starters do not come cheap. USA Today reports that a 30-second ad costs up to $5 million. On this list of sponsors, who has that kind of money? Yes, it’s the two pharmaceutical companies at the bottom: Continue reading

Exploring The Link Between Chronic Pain And Suicide

By Judy Foreman

This week’s grim report about rising suicide and overall death rates among white, middle-aged Americans contains a slim silver lining. Here it is:

The new analysis by two Princeton economists, Anne Case and Angus Deaton, suggests that chronic pain — and the opioids used to treat it — may be a key driver of the rising deaths. While the “noisy” opioid epidemic has garnered near-daily headlines across the country for several years now, the equally horrible but silent epidemic of chronic pain has not yet broken through into the nation’s consciousness. Maybe things are beginning to change.

Many people still don’t realize it, but 100 million American adults live with chronic pain, many of them with pain so bad it wrecks their work, their families, their mental health and their lives.

There are no hard data on how many people with chronic pain die by suicide every year. But there are inferences. The suicide rate among people with chronic pain is known to be roughly twice that for people without chronic pain.

(jennifer durban/Flickr)

(jennifer durban/Flickr)

Since there are 41,149 suicides every year in the U.S., according to the National Center for Health Statistics,  it’s possible that roughly half of these suicides are driven by pain. Not proven fact, but plausible hypothesis. This would suggest that perhaps up to 20,000 Americans a year with chronic pain kill themselves, which would be more than the government’s tally of 16,235 deaths from prescription opioids every year.  According to a CDC spokeswoman:

In 2013, there were 8,257 deaths that involved heroin and 16,235 deaths that involved prescription opioids. These categories are not mutually exclusive: if a decedent had both a prescription opioid as well as heroin listed on their death certificate, their death is counted in both the heroin as well as the prescription opioid death categories.

The truth, of course, is devilishly difficult to figure out with any certainty. Many people in severe, chronic pain have, and should have, opioids available. But unless they leave a suicide note it’s virtually impossible to tell if they overdose on purpose or accidentally. That’s in stark contrast to a pain patient who ends his or her life using a gun. That’s clearly a suicide, with or without a note.

In the course of researching my 2014 book on chronic pain, I heard many grisly stories. One Salt Lake City truck driver I interviewed would be dead today if his wife hadn’t walked in on him with a gun in his mouth. He had been in severe headache pain and after many visits to the ER, was repeatedly dismissed as a drug seeker, even without a medical workup. (Eventually, he was diagnosed with two brain aneurysms, bulging weak spots in a blood vessel). Continue reading

The Face Of Opioid Addiction: Vinnie, A ‘Regular’ Guy From Revere

In this 2013 file photo, a recovering heroin addict holds a demonstration dose of the medication Suboxone. (M. Spencer Green/AP)

In this 2013 file photo, a recovering heroin addict holds a demonstration dose of the medication Suboxone. (M. Spencer Green/AP)

Correction: An earlier version of this story said that approximately 100 Americans died each day from opioid overdoses in 2013. In fact, this number refers to all drug overdoses in that year, and opioid related overdoses, including deaths involving prescription opioids and heroin, accounted for two-thirds of the total, or approximately 67 deaths each day. 

By Dr. Annie Brewster
Guest Contributor

Want a glimpse of what opioid addiction really looks like?

Meet Vinnie: a self-described “regular” guy from Revere, Mass., and a recovering drug addict.

Toothless, and 60, Vinnie was prescribed opioids — Oxycodone, Oxycontin, Dilaudid, among others — for a chronic pain condition. Though he says he never intended to abuse these medications, Vinnie became an addict, taking painkillers for 28 years as his doctors kept prescribing higher and higher doses to manage his pain. Listen to his story here:

Vinnie stopped caring about anything except opioids, and finding his next dose of medication.

Vinnie, from Revere, is a recovering drug addict.

Vinnie, from Revere, is a recovering drug addict.

His marriage fell apart. He missed opportunities to spend time with his only daughter as she grew up. He became estranged from friends. He stopped taking care of his body and lost his teeth, gained 100 pounds, and developed diabetes, heart disease and arthritis. He fundamentally lost his will to live and contemplated suicide.

Ultimately, it was a pharmacist who put a stop to Vinnie’s opioid use by refusing to fill his prescription. After his initial panic, this abrupt end to the drugs led Vinnie to connect to a new doctor, an addiction specialist. His new regimen included a slow tapering of the narcotics and the initiation of Suboxone therapy.

The state and nation are in the midst of an escalating opioid crisis — it’s estimated that 67 Americans died each day from opioid overdoses in 2013, and the number of deaths from drug overdoses was three times that of the combined deaths from car accidents and homicides in that same year.

Just this week Massachusetts Gov. Charlie Baker enlisted medical schools to provide more addiction-related training to medical students. Against this backdrop, Vinnie’s story shows the harsh reality of addiction as well as a path to recovery.

How to fix it? It’s clear that a multifaceted approach is needed, as outlined in an extensive report put out by Gov. Baker’s Opioid Working Group in June.

One element, relevant to Vinnie, is consideration of one of several medications available to treat opioid addiction, including methadone, buprenorphine and naltrexone. Currently, these medications are underused, partly because they are controversial. Continue reading

Memo To Gov.-Elect: Include Pain Sufferers As You Seek Opiate Solution

(tudedude via Compfight)

(tudedude via Compfight)

By Cindy Steinberg
Guest contrbutor

Cindy Steinberg is the policy chair for the Massachusetts Pain Initiative and the national director of policy and advocacy for the U.S. Pain Foundation.

Charlie Baker vows to tackle state opiate problem,” was the Boston Globe headline two days after Election Day.

It’s good to hear from our newly elected governor that he plans to take steps to curb the ongoing problem with illegal use of prescription medication in our state. There’s little doubt that too many lives are being harmed by drug abuse and addiction.

But in a quest to fix one problem, policymakers need to consider the potential unintended negative consequences for the patients for whom these medications are a lifeline.

Cindy Steinberg (courtesy)

Cindy Steinberg (courtesy)

Gov.-elect Baker said in that Globe interview that he plans to convene a coalition of lawmakers, health care providers and labor leaders to confront the opioid crisis in our state. Representatives of the pain community — an estimated 1.2 million Massachusetts residents live with chronic pain — must be included in these discussions as well.

For many with chronic pain, the right medications mean the difference between a life worth living or not.

But despite these legitimate needs, more and more I’m hearing from residents of our state who are unable to access treatment that their doctors say they need and that they depend on. These are not addicts; these are people who are trying to manage their lives with debilitating conditions such as cancer, diabetic neuropathy, sickle cell, daily migraine, fibromyalgia, severe back pain and many others.

These are not addicts; these are people who are trying to manage their lives with debilitating conditions such as cancer, diabetic neuropathy, sickle cell, daily migraine, fibromyalgia.

Not including members of the pain community in discussions about how these medications are prescribed, regulated and controlled marginalizes the lives of thousands of Massachusetts citizens who live with pain caused by a myriad of conditions and serious injuries.

There is not a silver bullet solution to solving the abuse of prescription drugs. We need to take a thoughtful, multifaceted approach to ensure that those who need pain medication have access to it, and that those who choose to abuse these medications are stopped. There is no group more invested in making sure that medications are responsibly controlled than members of the pain community. Continue reading

Second Opinion: Doc Says Blue Cross Opioid Policy Is Flawed

Amidst concerns over a massive national increase in the use and abuse of prescription painkillers, health insurer Blue Cross Blue Shield of Massachusetts instituted a new policy to reduce pain medication addiction and misuse.

This week The Boston Globe reports that as a result of the new policy, Blue Cross has cut prescriptions of narcotic painkillers by an estimated 6.6 million pills in 18 months.

But Daniel P. Alford, MD, an associate professor of Medicine and director of the Safe and Competent Opioid Prescribing Education (SCOPE of Pain) Program at Boston University School of Medicine and Boston Medical Center, calls the policy “flawed and irresponsible.” Here’s Alford’s response:

By Dr. Daniel P. Alford
Guest Contributor

The Blue Cross Blue Shield of Massachusetts opioid management program was implemented to provide members with “appropriate pain care” and reduce the risk of opioid addiction and diversion.

In a recent Boston Globe report they claim “very significant success” with this program after 18 months because they have cut opioid prescriptions by 6.6 million pills.

Dr. Dan Alford

Dr. Dan Alford

Is this really a measure of success and if so, for whom? It likely saves Blue Cross money but has it successfully achieved their program’s stated goals? Does decreased opioid prescribing mean more appropriate pain care? Does decreased opioid prescribing reduce the risk of addiction or diversion, or does it decrease access to a specific pain medication (opioids) for treating legitimate chronic pain? Is the observed decrease in opioid prescribing evidence that opioids have been overprescribed, as Blue Cross claims, or is it proof that instituting a barrier to opioid prescribing (prior authorization) will decrease prescribing even for legitimate need? Are patients with chronic pain really benefiting from this program? I doubt it.

Adding yet more paperwork for physicians will not improve pain care, decrease addiction or the numbers of accidental overdoses from prescription opioids. Those physicians who are unwilling (or ambivalent) to prescribe opioids even when indicated will use the prior authorization requirement as an excuse to continue not prescribing. Those who are overly liberal in prescribing will figure out the most efficient way to satisfy the insurance requirements for approvals. Physicians who responsibly prescribe opioids – that is, prescribing them only when the benefits outweigh any risks — will be saddled with more administrative burdens to justify their well thought-out treatment decisions.

Some physicians may ultimately decide that prescribing opioids isn’t worth the trouble despite known benefits for some patients. Continue reading

Talking To Your Doctor About Pain

Chronic pain is notoriously hard to deal with — for both the sufferer seeking relief and the medical provider trying to alleviate a real problem that is sometimes difficult to pinpoint.

One critical issue, according to health reporter Judy Foreman, who just completed a book on pain, is that doctors are often woefully uneducated on the subject:

There’s a good, and obviously sad, reason why physicians know so little about pain: Medical schools don’t teach it. A major study of 117 medical schools from Johns Hopkins last year showed that out of all those years in medical school, med students get a median of only 9 hours of pain education. Even veterinary students get more. It’s high time Senators, Congressmen, medical school deans and other powers-that-be took this to heart.

Last year, hoping to gain a better understanding of how to better treat pain, a U.S. Senate committee held hearings on the topic. Now the Joint Commission, the a non-profit group that accredits hospitals and health care programs in the U.S. has created an animated video featuring little cartoon pain devils and urging patients to talk — specifically — with their doctors about pain. “Describing your pain to your doctor and nurse is important,” the narrator says. “Don’t tough it out.” Suggestions on how to deal with pain include traditional medications, but also acupuncture or massage. (No mention of medical marijuana here.)

Other advice to patients:

–Make sure their pain is assessed by a health care provider;
–Describe the pain they are experiencing to their caregivers; Continue reading

Overdose Antidote: What The Government Doesn't Do, And What You Can

naloxone

(PunchingJudy/Flickr Creative Commons)

You hear a lot these days about the national epidemic of painkiller overdoses. What you don’t hear so much about is what you can do to respond to those overdoses when they happen, much as we learn about CPR or defibrillators for heart attacks.

In an opinion piece just out in the Journal of the American Medical Association, Northeastern University assistant professor of law and health sciences Leo Beletsky and his co-authors argue that the government should do far more to enable the public to fight overdoses. Why doesn’t it? And what can each of us do? He explains here.

By Leo Beletsky
Guest contributor

Now a true national crisis, overdose from opioid drugs like Oxycontin and heroin kills about 16,000 Americans every year. Outranking car accidents, it is now the leading cause of accidental death in many states, including Massachusetts.

Rural and poor communities are particularly hard-hit, but contrary to popular belief, this epidemic does not discriminate: Overdose victims come from all classes, races, and age groups. Deaths afflict both legitimate and illicit users of prescription medications as well as those using street drugs like heroin.

Many of these deaths could be averted. Long-term prevention efforts are needed, but in the meantime, there are some straightforward things we can all do immediately to stop overdoses from turning fatal.

First: From the onset of the telltale signs of overdose, such as shallow breathing and slow pulse, it typically takes 30 to 90 minutes for the victim to die. This provides a precious window of opportunity to save a life. The tragic reality is that people often don’t recognize the overdose in time and thus don’t quickly call 911.

Second: Most people do not realize that once an ambulance has been called, they can help save the victim’s life. The key is to determine if the person is breathing; if not, rescue breathing and CPR should be performed. And ideally, the drug naloxone should be given to the victim.

Leo Beletsky

Northeastern University’s Leo Beletsky (Courtesy of Northeastern)

What is naloxone? Known by the brand name Narcan, it is an overdose antidote, a drug whose only effect is to reverse an overdose from opioid drugs like Oxycontin, Vicodin or heroin. Given via injection or nasal spray, it blocks the opioid receptors in the brain, typically working within about four minutes to revive the victim.

It seems like a no-brainer, doesn’t it? Shouldn’t anyone who takes opioids, or who is close to someone who does, know what to do in the event of an overdose, and keep this potentially lifesaving drug available?

In fact, however, it is much harder than it should be to get and fill a prescription for naloxone, even though it’s extremely safe and has no potential for abuse.

Why? Continue reading

Columnist Judy Foreman On Rampant Under-Treatment Of Pain

Health columnist Judy Foreman

Judy Foreman, perhaps the best-known health reporter in Boston and a nationally syndicated columnist, is now in pain. That is, she is writing a book about chronic pain — titled “A Nation in Pain: Healing Our Biggest Health Problem” –and is deeply immersed in the subject. She has kindly agreed to drop us an occasional post about the world of pain, and here is her first:

There’s a dynamite piece in the Jan. 19 New England Journal of Medicine that I would urge anybody in chronic, severe pain to read.

It’s written by Dr. Philip Pizzo and Noreen Clark, who chaired the committee of pain specialists who wrote an important report last June for the Institute of Medicine, an arm of the National Academy of Sciences. Pizzo is dean of the Stanford University School of Medicine and Clark is director of the Center for Managing Chronic Disease at the University of Michigan.

 

Medical schools barely teach about pain, even though pain is the main reason people go to doctors.

 


In their New England Journal piece, and in the lengthy Institute of Medicine report itself, Pizzo and Clark argue eloquently that under-treatment of chronic pain is rampant in this country, that we have a “moral imperative” to do better and that many patients in severe pain understandably see their doctors as “poor listeners.” (I can vouch for this personally: The first doctor I saw during an 8-month bout of severe neck pain a few years ago suggested my pain was an emotional problem.)

As Pizzo and Clark say, “the magnitude of pain in the United States is astounding.” Continue reading

Photos Make Chronic Pain Visible

If you live with chronic pain, you have vast quantities of company. The estimates range from a few million to one-quarter of Americans in long-lasting pain. But you might never know it. Pain is not visible. There’s no 12-step group for it. And if you’re hurting for long, you’re likely to retreat into isolation rather than reach out to others.

Enter the US Pain Foundation (US as of only this January; it began as the CT Pain Foundation), a volunteer-based group founded by Paul Gileno, a former chef who had to find a new calling after a broken spine left him in constant agony. It runs support groups; does advocacy work; and tomorrow, beginning at noonish, is holding a free-lunch session at the Tufts School of Dental Medicine that features The INvisible Project, which documents in photographs and text the lives of people with chronic pain. (One example is here.)

The project’s aim is to educate others about the lives of people with pain, Paul said: “I think the biggest perception for people who don’t have chronic pain all the time is that if they don’t see it, then it’s almost like they don’t believe it after a while. In the beginning, if you get injured, people say, ‘Are you okay?’ But after a while, that chronic pain stays and it’s a year later and people tend to say, ‘Okay, when are you going to get better?’ Well, I wish I could get better right now but my pain is still there. We’re saying, ‘It’s real and we want you to know this is real.'”

Also, Paul said, “We want to show other people with pain that their new normal isn’t much different than everybody else’s who suffers with chronic pain. We want to show them that it’s okay if you’re home one day and not feeling well, it’s okay if this is all that you can do. We want to show them that this is the new normal and they’re not alone.”

The people featured in the project have diagnoses ranging from arthritis to fibromyalgia to lupus to obscure syndromes few have heard of, but they have two things in common: They’ve been chosen by fate to be physically tortured, and they soldier on.  Continue reading