PAIN MANAGEMENT

NIH study: chronic pain afflicts more than 25 million Americans  

by Rachel Gotbaum

Kaiser Health News

In one of the largest population studies on pain to date, researchers with the National Institutes of Health estimate that nearly 40 million Americans experience severe pain and more than 25 million have pain every day.

Those with severe pain were more likely to have worse health status, use more health care, and suffer from more disability than those with less severe pain.

“There are so many people in the severe pain category that something has to be done,” said Richard Nahin, the lead author of the analysis and lead epidemiologist for the National Center for Complementary and Integrative Health, the arm of the NIH that funded the study. “If people are in the most severe category of pain, whatever treatment they are getting may be inadequate.”

Published in The Journal of Pain earlier this month, the study is an analysis of 2012 data from the National Health Interview Survey. It follows a comprehensive 2011 Institute of Medicine report on pain.

The analysis examined pain differences among ethnic groups. For example, Hispanics and Asians are less likely to report pain.

“If you are dealing with a minority group that doesn’t speak English, you need to pay greater attention to eliciting what they mean when they say they have mild pain or severe pain,” Nahin said.

The authors of the analysis hope their work will help inform greater research and better treatment options for people in pain.

“We’re doing a lot of research on the mechanism of pain and potential medications. The problem is there is no silver bullet,” said David Shurtleff, deputy director of NCCIH. “These data are giving us a better understanding of the pain conditions in the United States. We now can understand how sub-populations across age and across ethnic groups are experiencing pain.”

Shurtleff said that pain is a challenge to treat because it is not just about what happens to a person physically. Emotional and cognitive factors come into play as well. “Our major focus is on symptom management for pain,” he said. “It’s not necessarily [one] medication or behavioral intervention. It’s likely to be an integrative approach using multiple strategies to help patients alleviate their pain.”

Paul Gileno, who has had chronic pain since he broke his back 12 years ago, is doing just that. Gileno, who founded the U.S. Pain Foundation advocacy group, uses acupuncture, meditation, and changes to his diet to manage his pain. He is now able to take fewer painkillers, he said.

“You need to keep trying these different modalities because you never want to give up hoping that your pain can be reduced or go away,” he says.

Gileno endured multiple surgeries and has tried many different pain medicines, but he still lives with pain every day.

“After I saw the last neurologist and the last doctor and they said, ‘Listen we’ve done everything we can do and I don’t think your pain is going to go away,’ I had to come to terms that I would have chronic pain for the rest of my life,” said Gileno. “Pain comes with a lot of baggage. It comes with depression. It comes with feeling judged and you feel less of a person. You become very isolated.”

Untreated pain is something Dr. Sean Morrison sees in many of his patients. He is a geriatrician and director of Palliative Care at Mount Sinai Hospital in New York.

“Pain causes a tremendous amount of suffering,” said Morrison. “It has huge economic costs, because of people who cannot work … And it has a significant impact on caregivers who are caring for people who have pain.”

As more effective treatments are developed for a greater number of diseases, a growing number of people will suffer from pain as a side-effect, he said.

“Many of the cancer drugs we use now result in permanent nerve injury and resulting neuropathic pain which is very difficult to treat,” he said.

Another of Morrison’s frustrations is the growing level of scrutiny physicians and pharmacists are under as they treat pain. The law enforcement crackdown on prescription drug abuse appears to be making it harder for legitimate pain patients to get the medicines they need.

“What’s happening is that the same drug is being used appropriately by group of patients and inappropriately in a large segment of the population,” Morrison said. “What we’ve seen is people in pain are the unintended victims of the war on drugs.”

NIH is in the process of finalizing a National Pain Strategy to coordinate efforts among different agencies to prevent, treat, manage, and study pain.

This article, which first appeared Aug. 24, 2015, was reprinted from kaiserhealthnews.org with permission from the Henry J. Kaiser Family Foundation. Kaiser Health News, an editorially independent news service, is a program of the Kaiser Family Foundation, a nonprofit, nonpartisan health policy research and communication organization not affiliated with Kaiser Permanente.

I had to finally say goodbye to someone very important in my life. Me. The original me. The me I used to be. The me I finally understand that I will never be again completely. If I’m cured by some miracle. If my illnesses go away or into remission. If I get healthy again as quickly as I got so horribly sick. I’ll never be the same person I was. Pain changes people. I went through, and continue to go through a trauma to my body and mind. A death of a loved one can be gotten past eventually. You don’t forget that person ever. You grieve their loss, you miss them, you go through stages of different emotions. In time, you find ways to cope, to fill the loss with memories, with other people, with activity. You don’t hurt so badly and you begin to remember the good times fondly. In chronic pain, you can’t step away or separate yourself from you. It’s a part of you 24/7. Every minute of every day. You feel it, you think about it, you cry, you scream, you rail against it. You can’t get away from yourself. It’s like a cloak that covers you from head to toe. A dark, black, heavy weight. It presses down on you, forces you to keep your head down, bend under the strain. It hurts to smile, so you frown. It hurts to laugh, so you cry. It hurts to reach out to others, so you shut down. There is no escape. Meds can ease it temporarily. Cognitive thinking can help you understand it. Counseling can change how you look at it. But it’s always there. And always will be there. So you have to find coping mechanisms. I’m not there yet. I’ll get there. I’m determined and stubborn. But I still grieve the loss of the person I was. You would have liked her. Most people did. She was smart, funny, personable. She had a quick, dry wit. She loved being around other people. She treasured her friendships and loved her family. She wanted to learn a little about everything. She was smart. She was a good friend and always sympathetic to those in need. Always willing to help others. She was empathetic. She loved to travel and learn everything about new places. She was one of the good ones. I miss her everyday. There is a huge hole in my heart and soul where she used to reside. It will never be filled. The new me is like an infant. Having to learn from the beginning my limits, my goals, my wants and needs. My dreams. I am getting to know myself slowly, a little something new every day. The new me will be okay. Not a pale imitation of the old me. I won’t allow that. I’m still in control. The new me will push and fight to become as strong and happy as the old me. Just not today.

After almost 4 years total, I finally have an appeal hearing date in October! It’s been a long, painful journey to get here. So many doctors, tests, medicines, side effects, failures, doubts, fear, depression, anxiety, panic, and anger. Anger at having to prove my pain as real and not contrived. Having to validate to others that I AM as sick as I say I am. Hearing strangers tell me I should be working. Others are worse off than I. I’m taking advantage of benefits I don’t deserve. I’m lazy. I’m faking. I just want to sit at home and watch television. Even worse than strangers stating these opinions are those I once considered friends. People who worked alongside me when I had a bucket by my desk from the nausea. Co-workers and bosses saying I looked fine, why was I doing this? Close “friends” who got tired of me cancelling on them. Telling me to “get over it!” The hurt this caused will never be forgotten. Trust was lost. I became hard, distant, keeping to myself. I was always so social. I loved being around others and didn’t really enjoy being by myself. Now it was me, myself, and I. I couldn’t count on anyone else to be there for me in my time of need. Whereas, I was always there for them. I cried for their losses, cheered for their wins, lent an ear to listen or a shoulder to cry on. But when I needed the support, they were gone. I don’t know if I’ll ever be the same with people. I’m distrustful, cautious, careful, where I used to be so open and welcoming. I don’t tell new people much about myself now. I smile and act happy. I downplay what they may have heard. I’m not me anymore. I don’t know if I’ll ever be again. That hurts. A lot. 

http://www.healthcentral.com/migraine/cf/slideshows/migraines-visible

This letter was not written by me. I fully agree with the authors’ views on chronic pain management. We sufferers are being left with very few options if nothing changes. Thanks Mr. Unger for writing about how we all feel. The embarrassment and shame of being treated like a criminal is unfair, but widespread in our world. 

By Donald N.S. Unger

FEBRUARY 03, 2015

I WILL BE in chronic physical pain until I die. I’m 53, and this has been true for more than half of my life. I accept it.

Pain medication is inadequate. But with it I am more consistently functional and can minimize being housebound, bedridden, or hospitalized. I can be a responsible homeowner, spouse, parent; I can work as a teacher, a writer, an editor.

I recognize that drug abuse and addiction are serious problems. But ever-tighter regulations, at both the local and national levels, are of dubious value in reducing them — while causing grave harm to those of us in chronic pain, to the overwhelming majority who take medication for appropriate reasons, with effective oversight.

We don’t talk about this much — “They’re-making-it-harder-for-me-to-get-my-drugs’’ isn’t exactly a winning public flag to fly.

I’ve never been arrested, found to be out-of-compliance, had a substance-related accident or hospitalization, but increasingly I am a suspect, treated less as a patient and more as a criminal.

I’ve been subject to drug testing — random-but-regular, bitterness rising — for longer than I can remember. I recognize valid public health concerns associated with taking pain medication: doctor shopping; mixing prescribed drugs, or street drugs, from a variety of sources; people who scam physicians into providing legal prescriptions, then sell the meds on the street. Initially, I didn’t think I would care.

But I do care. The feelings of humiliation and degradation don’t fade; they simmer.

Increasingly I am a suspect, treated less as a patient and more as a criminal. The feelings of humiliation and degradation don’t fade; they simmer.

My latest pain contract, presented as a requirement for obtaining care, included a demand that I appear, whenever ordered, before any practitioner in the health maintenance organization to which I belong, within an hour’s time, with my medication bottle in hand.

For a pill count.

How, exactly, is that supposed to work?

I have a job, a family, a life. I can’t carry around a bottle of prescription narcotics; the contract deems loss, theft, or damage as suspicious activity, and the pills would not be replaced. So I would have to interrupt teaching, go home, retrieve the pills, and report to a practitioner.

Within an hour.

I would rarely be able to do this, and when I could, doing so within an hour would usually be impossible. But in failing to comply, I would risk the revocation of my “pain medication license.”

Again, abuse of prescription pain medication is a serious problem; people are dying. But a vastly larger group of us are living — in unremitting pain, in the face of which we do the best we can to remain productive and independent, to benefit, rather than burden, our families and society at large. Most of us have accepted ever-more-onerous restrictions, no matter how humiliating — urination on command, guilty-until-proven-innocent — regardless of how they clash with American values and medical ethics.

Do we have a choice?

Well, sadly . . . yes. Street narcotics. They are broadly available, and they’re less expensive. There’s no oversight, and no humiliating urinalysis.

But is this the direction we want to go?

Finally! After almost 3 years of paperwork, phone calls, information gathering, collecting records, frustration, anger, and crying, I have a hearing date for SSDI! Since 2011, I’ve been denied twice. I hired a lawyer who appealed my case on September 14th, and, and several weeks ago, I was informed by my attorney that SSDI was currently reviewing my file to see if I qualified as a “Dire Need” or “Special Circumstances” case. I apparently did, because I  have a hearing on October 15th! Finally! The relief of just having a confirmed date is overwhelming. Yes I’m scared. Yes I’m concerned. Yes I’m nervous. But I can do this! I have suffered, in agony, without any assistance from  state or government for almost 4 years. I have bankrupted myself and my mother is on the verge. I deserve this dammit! I’ve fought so hard and for so long! I deserve some help! Some relief (at least financially), some compassion and empathy (hopefully) from the judge. I hate that it is on me to prove how sick I really am. To prove that I’m not faking any of this, but really, who would want to live like this?! I know that winning my case and getting my benefits won’t ease the pain, but it will certainly ease my mind, which will be a huge load off of me. Please think of me on October 15th! I’m not just fighting for myself, but for everyone suffering from invisible illnesses. Better days ahead! #AlwaysKeepFighting 

Internalizing the Stigma of Migraine

By Kerrie Smyres—July 12, 2013

Every time I have a migraine, there’s a voice in my head that questions whether I’m just being lazy. Even after after five years of practicing listening to my body, extensive therapy, and lots of meditation and self-reflection, I catch myself questioning the legitimacy of my migraine symptoms. Not so much the pain — that’s pretty hard to deny — but the fatigue, brain fog, and general malaise.

I did it again today. After two days of traveling to get to Seattle, where I’m housesitting to escape Phoenix’s monsoon season, I woke to an overcast day. Exactly the kind of day that triggers migraines and prevents me from living in Seattle. I was clearly in a migraine, though the preventives I’m on kept the pain at a level 4. I can physically function at that level, but thinking is tough. Unfortunately, thinking was my primary goal for the day and I was agitated that I couldn’t focus or construct coherent sentences. And I wondered if I was just being lazy, especially because they pain isn’t that bad.

Though quieter than it was five years ago, that voice nagged at me for hours: “You should be doing more. You’re choosing to read over working. You’re not that sick. Just take out the computer. The migraine’s not that bad. You’re being lazy. You haven’t written in a week. You need to be productive.” Then the clouds cleared out and I began to feel a bit better. The first thing I wanted to do? Write. I was not procrastinating or lazy this morning, I was sick. Why is it so hard for me to grasp that obvious, fundamental truth?

The stigma of migraine and society’s belief about illness in general and migraine in particular have occupied my mind a lot lately. I have to wonder if I and so many other migraineurs berate ourselves not only because other people regularly distrust that migraine is a true physical illness, but because we have internalized those same doubts.

This is where the stigma of migraine is especially damaging. Dealing with people who don’t understand — and don’t seem to want to understand — what we’re going through is frustrating and infuriating. Believing it ourselves is way more harmful because it demoralizes us and causes us to question the legitimacy of our own experience. Instead of treating ourselves with compassion, as we would a loved one who was sick, we criticize ourselves for being lazy or unproductive. We push through our pain and other symptoms instead of nurturing ourselves. We dismiss our struggles as not that important. All of this reinforces the message to ourselves (and others) that migraine is not a serious, life-altering illness.

Worst of all, these beliefs fill us with guilt and self-doubt. Even when we “know better,” when we accept as fact that migraine is real and our symptoms are debilitating, we don’t always embrace these beliefs emotionally. My therapist would say it is the difference between knowing something intellectually and knowing it in our hearts. I’ve had the intellectual part down for a while, the emotional aspect still eludes me.

No matter how much I write about the needs of migraineurs and work to reduce its stigma, that very stigma has insinuated itself into my self-perception. It will continue to haunt me whenever I have a migraine until I accept in both my mind and heart that I am not deficient or lazy, but have an illness that is in no way a reflection of my personality, desires, or attitude. That’s a tall order. It’s also my greatest wish for all migraineurs — that we all find a place of internal peace where we can separate who we are from this illness and accept that having a neurological disorder doesn’t make us wrong or bad or broken.

Side note: Kerrie Smyres, I hope you don’t mind me publishing this article on my blog. It speaks to me so much. I have said these same things repeatedly. Your writing is spot on! Stay strong, Judi #AlwaysKeepFighting

Treating “migraine brain”

By Tammy Rome—August 1, 2014