What Rights Do Pain Patients Have?

By Carol Levy, Columnist

Too often when I read comments posted to articles about the “opioid epidemic” or the CDC opioid guidelines, someone will write that “we need to bring a class action lawsuit.”

I am always perplexed by this.

Many of us feel we have the right to treatment for our pain, including the right to opioids.

But the only potential idea under which this might be considered a “right” (disclaimer: I am not an attorney) is in the Declaration of Independence: “We hold these truths to be self-evident, that all men... are endowed by their Creator with certain unalienable Rights, that among these are Life, Liberty and the pursuit of Happiness.”

Most of us do not have pain from a terminal condition. That takes care of the right to life. Many of us are imprisoned by our pain, but that is not the liberty the founders meant. The only one potentially relevant is the right to happiness.

What a great thought:  We are entitled to be happy. But are we? No. Those rights are not codified in law. They are a statement of belief.

How about the Patient’s Bill of Rights? It too is not a legally binding document.

It does not specifically include the right to pain management, only a right to treatment with “available resources and generally accepted standards,” along with the right to refuse that treatment.

Many states have specific guidelines. But as with the CDC opioid recommendations, they are merely guidelines (although often treated as rules and regulations).

Pain consumes us. More so, I think, then almost any other disease or disorder. If it is constant, we cannot put it aside. Being with friends, going out to dinner, even sleeping may not provide a scintilla of relief or distraction.

How then can it not feel like we have the right to pain relief? Why is it we cannot demand treatment, demand opioids?

Simply put, it is not the way the country or the world works.

We have the right to access health care. We have the right to say to a doctor, “Please treat my pain.” But we do not have the right to force a doctor to see us or to provide a particular treatment, such as opioids. The doctor also has a right to say, “No, I cannot help you.” or “I do not see pain patients.”

Maybe if we looked at it from a different angle, we can gain some distance.

If I have a rash, I go to a doctor. If I say, “I want you to prescribe this drug,” he doesn't have to agree. He may refer me to a dermatologist who says, “I don't treat rashes.” I can't demand that he treat me. I have to look for someone who does.

We can try and find a doctor who will agree, but there is always a chance we will not be able to find one. That does not mean our rights are being abrogated or denied. It merely means we have to work harder to find a doctor who will help us, no matter how daunting a task that may be.

It means that we have to accept the fact that we may want one form of treatment, but the doctor is not obligated to provide it.

And it means understanding that we have a right to try and find care, but not a right to demand it.

Carol Jay Levy has lived with trigeminal neuralgia, a chronic facial pain disorder, for over 30 years. She is the author of “A Pained Life, A Chronic Pain Journey.” 

Carol is the moderator of the Facebook support group “Women in Pain Awareness.” Her blog “The Pained Life” can be found here.

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

Pain Documentary Producer Responds to STAT News

(Editor’s note: STAT News recently published an article about “The Painful Truth” documentary, which is currently airing on some public television stations. The article was critical of the doctor who produced the program for not disclosing that he had “significant financial ties” to the pharmaceutical industry. Dr. Lynn Webster asked STAT for an opportunity to respond to the article, but the site’s managing editor did not agree with Webster’s contention that the article was unfair and that it misrepresented his documentary. Below is the rebuttal column Webster sent to STAT.)  

By Lynn Webster, MD, Guest Columnist

In STAT News, David Armstrong's article on March 24, "TV documentary on pain treatment funded by doctor with industry ties," misrepresented the purpose of the film, ignored several of my detailed answers to his questions, and unfairly criticized my professional associations.

Armstrong suggested that the TV documentary downplayed the role of Pharma’s contribution to the opioid problem. It didn’t, nor did it advocate for the use of any drugs, including opioids, because that was not the purpose of the film.

Rather, it focused on the lack of compassion and treatment for people in pain, and it shed light on the largest public health problem in America: chronic pain.

The STAT News article states, “Also criticized is the Centers for Disease Control and Prevention, which last year issued voluntary guidelines that advise doctors that the use of non-opioid treatment is preferred for chronic pain.” Yes, the CDC is criticized in the documentary, but not because it recommends non-opioid treatments. It's criticized because the CDC guidelines have caused many patients to lose access to pain management.

The article inaccurately states that I want opioids to be “the rule” of pain management.  I never said any such thing. As I told Armstrong, I consider opioids to be imperfect analgesics, at best, and I emphasized how critical it is that we develop and research drugs and treatments that will eliminate the need for opioids. I also explained that our current opioid crisis is largely due to lack of insurance coverage for alternatives to opioids.

The documentary clearly advocates for a multi-discipline treatment and favorably shows a clinic where patients get such treatment including bio-feedback, and occupational therapy. It also chronicles the story of NFL football player, Hal Garner, whose life was destroyed by opioids. Given this, it is hard to see how one could conclude the film advocates for opioid therapy.

Armstrong seemed to be most concerned that my professional work with the pharmaceutical industry had somehow influenced the messages in the show. In reality, my wife and I committed to funding the documentary ourselves. We accepted no corporate sponsorship because we wanted the freedom to share the truth of these stories from the patients' point of view, and not from the perspective of pharma, regulators, or insurance.

Publishing the amount of money associated with my research misleads readers into thinking I personally received those funds. I did not. The research dollars received from Pharma were grants for clinical studies conducted by the research company where I was employed. The government requires the funds to be reported under my name since I was the principal investigator for the studies, but I am not a personal recipient of these grants. I clearly explained that to Armstrong when he asked me about those specific funds.

I am currently working with several pharmaceutical companies with the potential to develop game-changing innovations. We are making headway in creating pain medicines that will be as powerful as opioids but will have almost no addiction potential and/or risk of overdose. We need Pharma’s involvement for these advances to occur, and that is why I work with them. I'm deeply grateful that I have the training and experience to contribute something of value to society. My ability to conduct comprehensive medical research enables me to help the community of people living with pain as well as those living with addiction.

Armstrong’s article, filled with criticism as it is, ironically shows why it was important to produce the documentary. It illustrates how opioids are such a volatile topic that anyone associated with them - whether it's a researcher, Pharma, or patients with pain - are subject to censure, antipathy, and bias.

The film attempted to give people in pain a voice. The painful truth is that they have been voiceless and continue to be victims in a broken healthcare system.

Lynn Webster, MD, is vice president of scientific affairs at PRA Health Sciences and a former President of the American Academy of Pain Medicine. He is the author of the award-winning book, “The Painful Truth” and co-producer of the documentary of the same name.

You can follow Dr. Webster on his blog, and on Twitter @LynnRWebsterMD, Facebook and LinkedIn.

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

Living with Intractable Pain

By Lynette Shier, Guest Columnist

I am a true intractable pain sufferer. I got my condition over 30 years ago when a drunk driver in a van slammed into me while I was riding on the back of a motorcycle. I was 18 years old.

I should have died in that crash, but survived. At first, I was convinced it was a miracle and a blessing. I feel entirely different about it now, as the CDC opioid guidelines have led to many of us losing the only form of pain relief that works.

Unlike chronic pain, which can be a pain that lasts more than 3 months, people who have Intractable Pain Disease have a constant debilitating pain that doesn't go away. There is no surgery, procedure or medication that cures intractable pain. This type of pain is often unacknowledged, allowing it to go untreated or under-treated

I have contacted my state medical board and went to a public meeting to see if exemptions can be made for those of us who suffer from intractable pain. I also contacted the CDC to bring attention to this issue, only to be told I should see my doctor.  

My condition goes beyond anything a human being should be able to live with. I had multiple injuries in that crash, including my left leg being torn to shreds and amputated at the scene. I also lost two inches of femur (thigh) bone, shortening the stump that is left.

My pelvis had what doctors call a "vertical shear fracture” – it was completely broken from top to bottom, and essentially split in half. The surgeon said my left hand was crushed into "a million pieces." My arm was broken just below my shoulder joint.

LYNETTE SHIER

I lost three-quarters of the blood in my body and was well on my way to the other side, but they flew me to a trauma center and performed 15 hours of emergency surgery, along with blood transfusions. They drilled holes into my hips, placed large pins into them, and then strapped me into a vice that pushed my pelvis back together until the fracture healed.  

I was in the hospital for 3 months and in physical therapy for years. I have lived with intractable pain ever since, raising children and working at jobs that even a healthy person would say are physically challenging. I couldn’t have done it without pain medication.

My body eventually began to give way to other complications. I now have bursitis, tendinitis, arthritis, neuropathy, degenerative disc disease, scoliosis, and root nerve impingement. My body is so crooked that I cannot walk correctly. I had to quit working in 2009.

After all these years of taking pain medication for my increasingly degenerating conditions, I need much higher doses than your average person can take or a physician would normally prescribe. This has caused me to be in a constant state of torturous pain and agony.

I have considered ending my life merely to end the pain a few times, but I cannot do that, as I am a fighter and will not give up that way.  

This is a travesty, and no human being should feel they need to do that to end their suffering when it can be prevented with proper treatment with pain medication.

If a patient commits suicide to free themselves from intractable pain, that should be considered a criminal act by the doctors who deprived them of medication and those who make the rules and guidelines at the CDC and the DEA. It is murder in my eyes.

There is no reason they can give me, and they have tried, that excuses the suffering they are causing people by taking away the only thing that brings them relief and makes them feel human. I'm not talking about junkies that are trying to get a fix. I'm talking about true intractable pain for which there is no shot, surgery, miracle procedure, or non-opioid medication that works, and the only thing that gives some relief is opioid medication.

No one should suffer from that kind of pain on a constant basis, and no one should be denied proper care for this condition. It is inhumane! If we had cancer or were terminally ill, they would have no problem giving us as much as we needed to keep us out of pain because its considered inhumane to allow suffering. Yet the CDC guidelines are doing just that, reducing quality of life and increasing human suffering.

They do not tell you that studies have shown that severe pain can kill you. It keeps your body in a constant state of stress, wearing down your body, organs and mind.

30 Years of Opioids Without an Overdose

The overdose statistics they keep are also not correct. A pain patient may die from a heart attack or stroke, but if they find opiates in the toxicology report they could classify it as an overdose, even when the patient has been taking opioid medication appropriately while under a doctor's care.

I have been taking pain medications for over 30 years, at doses that a normal person would probably overdose from, but I have never overdosed in my life. I am still under-dosed, as fear has taken over physicians.

This has made me housebound. I don't even want to get up and go to the bathroom, as I know it will cause me pain. It takes everything I have to get up every day, put a smile on my face, say a prayer, and do very limited things in my home. Just taking my dogs out or limping from my bedroom to the kitchen to get something to drink takes the life out of me. It's misery beyond what I would ever wish upon my worst enemy.

They worry about addiction. Well, if there is no cure for this condition and I'm to be in pain for the rest of my life and need medication for any kind of relief, what difference does it make if I'm addicted?

Someone has to do something about this, and by someone I mean ALL OF US WHO SUFFER! And all the physicians and pain specialists who know it is cruel and wrong.

I am attempting to start an intractable pain movement to bring more attention to us. Right now, there are too many different advocacy groups, websites, blogs, and videos. I see so many people out there who suffer and try to get their story out, but in so many separate places. I feel if we all came together in one place, maybe we could bring attention to this horrible situation and get things fixed.

We cannot just complain on these forums. We must show them what this is doing to us and our families. Stand with me and let’s fight for intractable pain relief. Make the CDC deal with this correctly before we all die of pain.

If you’d like to know more about living with intractable pain, please watch my video.

Lynette Shier lives in New Mexico.

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.

Lynette Shier lives in New Mexico.

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.

Why the CDC Needs to Recognize Palliative Care

By Barbara Nelson, PhD, Guest Columnist

A little over a year ago, the Centers for Disease Control and Prevention released its “Guideline for Prescribing Opioids for Chronic Pain.” Its goal is to help reduce the raging and heartbreaking overdose epidemic in the U.S.

Unexpectedly, the guideline has exposed the extraordinary need for palliative care for millions of patients who may live for decades with intractable pain. These patients now face enormous obstacles getting medically-needed opioids for effective pain control, especially when the dose exceeds the highest recommendation made in the guideline of 90 morphine milligram equivalents (MME) per day.

This unbending recommendation is too low to provide pain control that will keep many intractable pain patients out of agony.  In the last year, untold numbers of chronic pain patients requiring palliative care lost the correct opioid dose for their diseases -- making work, self-care, and family interactions harder or impossible.

I have seen this suffering, both personally and professionally.  I have an incurable and progressive neurological pain disease that, before diagnosis and some pain control, left me unable to read. My disorder profoundly changed my life as I previously knew it.

The dosage recommendations in the CDC guideline show no compassion for those with intractable pain, who will probably need higher opioid doses for the rest of their lives. Only later, when faced with terminal illness and imminent death, will official support for adequate pain control be acknowledged.

How Did We Get Here?

The objective of the guideline was to reduce opioid addiction and overdoses by limiting the dose and duration of prescriptions written by primary care doctors.

The guideline begins with support for “appropriate and compassionate” pain control for those with chronic pain.  It pays special attention to the chronic pain care needed by those fighting cancer, needing palliative care, or facing terminal illness. These three categories of pain are excluded from the CDC’s suggested highest daily opioid dosages because of their well-researched requirements for higher than average pain control, 

There is a problem to this approach, however.

The differences between these three categories are unclear to many doctors and patients. Most frequently, palliative care is confused with end-of-life or hospice care for cancer.  But palliative care is different from end-of-life care, because in palliative care there is no assumption of imminent death, nor is there a decision to withhold medication that might curtail the disease itself.

Chronic obstructive pulmonary disease (COPD), multiple sclerosis and sickle cell anemia are routinely considered diseases that can require palliative care, and these patients may live decades after their diagnoses.

The CDC guideline defines palliative care “as care that provides relief from pain and other symptoms, supports quality of life, and is focused on patients with serious advanced illness. Palliative care can begin early in the course of any serious illness that requires excellent management of pain or other distressing symptoms.”

Not all diseases requiring palliative care also require opioids.  But those patients who require both palliative care and opioids are virtually invisible in the guideline.  Invisible patients get neither appropriate nor compassionate pain care.

The Need for a Palliative Care Appendix

The CDC should produce an appendix for all prescribers – not just primary care doctors – that would help them provide fully adequate pain relief to palliative care patients with life-long pain rather than near-death pain.  

The appendix could start by examining the legislative or regulatory language used in the 13 states that define intractable pain and that allow higher than typical opioid dosing.  The appendix also needs to emphasize research on the most painful long term diseases, which will offer physicians a wider variety and more specialized array of treatment options than is available from a focus on generalized chronic pain. 

The appendix could begin with the recognition that intractable pain patients needing palliative care do not get “high” or “euphoric.” Opioids are medicines that reduce pain and let them live closer to normal lives.

Helping physicians assist patients in organizing self-directed palliative care is another necessity, because most patients will not have access to a palliative care practice, let alone to one that is appropriate for their conditions. 

For patients with rare diseases, the CDC should emphasize the role of the doctor as learner as well as expert, as he or she must take the time to become familiar with a disease they may have never seen before. 

Yes, there may be some patients who attempt to scam the palliative care approach. However, I doubt that this kind of long-term pain is easily faked. The CDC guideline itself asks physicians to make dozens of new medical judgments. Acknowledging intractable chronic pain patients who require palliative care is just one more.

If the CDC does not add a palliative care appendix to the guideline, perhaps the American Academy of Pain Medicine, the American Medical Association or the American Academy of Hospice and Palliative Medicine could convene a group of all stakeholders to thoughtfully discuss the issues of pain treatment within palliative care.  Civil rights organizations that focus on inequality, including medical inequality, could contribute to this effort. 

Groups outside the CDC could also expand the mandate beyond training primary care physicians about opioid dosages, to include pain treatment for diseases requiring palliative care.

The conflict over opioid guidelines that are treated as laws or regulations, instead of recommendations, is not going away.  Several states, insurers and federal agencies have adopted versions of the CDC guideline, and others are sure to follow.  

Providing adequate pain control to palliative care patients would not make legislators, regulators or citizens any less committed to reducing misuse of opioid prescriptions.  In fact, drawing attention to palliative care would demonstrate a welcome dose of wisdom that millions of Americans would applaud.

Without an appendix to the CDC guideline or some other booklet that promotes correct palliative pain care, how will outstanding doctors be protected from unwarranted intrusions by insurance companies and drug enforcement organizations?  How will patients who deal correctly with pain that most people can’t imagine receive the palliative care that they deserve? They won’t.

The CDC’s “one-size-fits-all” guideline is bad medicine and bad policy. It ignores millions of intractable pain patients who require higher opioid doses.  

Everyone needs to recognize the importance of palliative care. You may need it someday. And unless changes are made, you won’t get appropriate medication either.

Barbara J. Nelson, PhD, is Dean Emerita of the UCLA Luskin School of Public Affairs and is Professor Emerita of UCLA’s Public Policy Department. She is the founder of The Concord Project, which builds social capital that allows people from divided communities to work together on projects of mutual benefit.

Barbara also directed The Leadership and Diversity Project, improving policy education and policy making through creative inclusion and enacted equality.  She served on the board of the Greater Los Angeles United Way.

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.

Lyrica, Cymbalta and Savella: Do They Work?

By Lana Barhum, Columnist

If you have fibromyalgia, chances are your doctor has prescribed one or more of the three drugs approved for fibromyalgia by the U.S. Food and Drug Administration (FDA).   It is also likely you have been disappointed when they didn’t work and by the side effects they caused.

I have tried Lyrica (pregabalin), Cymbalta (duloxetine) and Savella (milnacipran). My experience is they don’t work well and clinical research doesn’t offer up enough credible evidence that they do.

Patient feedback on these medications is actually more telling than recent studies.  Just check any fibromyalgia online forum and you will find your unpleasant experiences with these medications aren’t unique and shared by many.

Lyrica

Lyrica was developed by Pfizer as a treatment for epilepsy, but it is now widely prescribed for many different types of pain. Lyrica was approved by the FDA in 2007 as the first drug specifically for the treatment of fibromyalgia. Pfizer notes on its website that Lyrica “significantly relieves fibromyalgia pain and improves physical function” in fibromyalgia patients.  But does it really?

An initial study from 2005, with results published in Arthritis & Rheumatology, found Lyrica to be effective at relieving pain in only 29% of the 529 fibromyalgia patients in the study group. 

A major shortcoming of the study was that weight gain affected 10% of the study participants.

What was also interesting about the Arthritis & Rheumatology study is that a large number of participants dropped out due to Lyrica's side effects, which included edema, dry mouth, weight gain, infection, increased appetite and constipation.

A 2014 study of out of the University of Calgary, with results published in the journal Therapeutic Advances in Drug Safety,  also found that Lyrica causes edema and weight gain in some patients. 

Those side effects, especially the weight gain, aren’t worth it for a drug that doesn’t seem to work well for most people. You would get more benefit from dietary changes for fibromyalgia than with Lyrica - at least that was my experience. 

All I got from taking Lyrica was a 40 pound weight gain that took me two years to take off. I made the mistake of staying on it for too long, believing that it would one day work for me.

Cymbalta

Cymbalta was originally developed and marketed by Eli Lilly as a treatment for depression. You may even remember some of the commercials for it. In 2008, Cymbalta become the second drug approved by the FDA to treat fibromyalgia.

While Cymbalta doesn’t have stellar ratings amongst fibromyalgia patients, it does outperform Lyrica in my opinion. Initial trials, with results published in The Primary Care Companion to The Journal of Clinical Psychiatry, show that over a third (36%) of study participants reported at least a 50% reduction in pain, based on a dosage of 60 mg once or twice per day.

A report published in the journal Expert Review of Clinical Immunology found that many participants dropped out of Phase I, II, and III trials of Cymbalta due to side effects, including nausea, headache, and sleep issues. 

Cymbalta has given me some pain relief over the years, but I have also made changes to my diet and lifestyle which may have helped as well.  If Cymbalta has helped me with anything, it is managing the depressed feelings fibromyalgia often leaves in its wake.

Savella

My Savella experience was far worse than my experiences with Lyrica and Cymbalta.  I could only stay on it for two weeks because the side effects were more than I could handle. Dizziness, vertigo, nausea, fatigue, and severe headache were a few of the side effects that stood out.  And I didn’t get any fibromyalgia pain or symptom relief.

Savella was developed by Forest Laboratories specifically for fibromyalgia and was approved by the FDA in 2009.

Like Lyrica and Cymbalta, studies confirm Savella’s poor performance. One double-blind study, reported in the journal Pharmacy & Therapeutics, found that only about one in four fibromyalgia patients (26%) were getting pain relief. 

The rate of discontinuation due to Savella’s side effects and treatment failure was also high -- nearly 43 percent.

In 2010, the consumer advocacy group Public Citizen petitioned the FDA to remove Savella from the market because it increased blood pressure in patients who didn’t have high blood pressure to start with. The group also argued Savella posed an increased risk for suicidal thoughts.

The FDA responded last year and denied Public Citizen’s petition, but said it would continue to monitor the safety of Savella.

My Thoughts

The only medication that I have seen that offers real improvement is Pfizer’s Neurontin (gabapentin), which is prescribed “off label” because it is not specifically approved to treat fibromyalgia by the FDA. Neurontin has helped my nerve pain and I also take muscle relaxers as needed, as I am frequent sufferer of muscle cramps and spasms. 

Studies have confirmed Neurontin’s effectiveness in treating fibromyalgia pain and improving sleep and fatigue. One double-blind study, with results published in Arthritis & Rheumatism, found that over half (51%) of fibromyalgia patients were finding relief with Neurontin.   

That’s not bad for a medication that was originally developed to manage seizures and whose formula has been the same since 1993. While it has helped me, I certainly understand Neurontin hasn’t helped everyone. There are even reports of Neurontin being abused by addicts. 

I am not sure why the makers of Lyrica, Cymbalta and Savella continue to market medications that don’t offer most people real results.  Yet, these medications remain available and doctors are still prescribing them to treat fibromyalgia. 

Let's just hope there are new fibromyalgia drugs on the horizon that actually work and give us real and reliable symptom and pain relief.

What has been your experience with Lyrica, Cymbalta and Savella?

Lana Barhum is a freelance medical writer, patient advocate, legal assistant and mother. Having lived with rheumatoid arthritis and fibromyalgia since 2008, Lana uses her experiences to share expert advice on living successfully with chronic illness. She has written for several online health communities, including Alliance Health, Upwell, Mango Health, and The Mighty.

To learn more about Lana, 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 represent the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

How Doctors Can Dash Your Hopes

By Crystal Lindell, Columnist

I saw a new specialist this month. A neurosurgeon.

It didn’t go great. In fact, it sucked. He ordered some MRIs, which all came back fine, just like they always do. And then he created a treatment plan that literally included losing weight and not wearing bras.

Thanks.

He had come highly recommended by a good friend and I was hoping he would be willing to try something different for me. I wasn’t sure exactly what, but I had the vague idea that he might be able to cut my nerve. But, he said that was way too risky and wouldn’t even consider it.

Then he suggested a bunch of horrible medications that I’ve l already tried, like Lyrica and gabapentin and pain patches.

And came up with his brilliant idea of not wearing bras.

My pain had become much more manageable, but over the last three or four months it has spiked. A lot. Leaving me with too many days where I can’t get out of bed, no matter how many pain pills I take.

I had long ago given up on seeking out new specialists. Two unsuccessful trips to the Mayo Clinic, multiple university hospitals and thousands of dollars in medical bills tend to dampen even the most enthusiastic patient’s drive to find new treatments.

But the pain was coming back, and after recently increasing my opioid dose, I was reluctant to try to go up any more. And so, I figured I would just try one more guy. One more doctor. And just, see.

I forgot how completely devastating it is when you get your hopes up, only to have them crushed.

In the back of my mind, I confess I had let myself get a little hopeful. This doctor is known for being open to experimental treatments, and I thought he might be willing to try some new approaches. And I think, deep down, I was holding on to this as my last out. As the one thing out there that might still be able to help me. The one thing that I hadn’t tried yet.

But as I sat in his office, going through four years of medical records with him, explaining everything I had been through and everything I had tried, only to have him blame my bra, I remembered why I had given up on trying new doctors.

And as I sat in the MRI machine for a full hour, getting every angle and holding my breath for various shots, I remembered how awful all the medical tests can be, and how heartbreaking it is when your very real pain doesn’t show up on any scans. How hard it is to remind yourself that you’re not crazy. That you are actually sick. And it doesn’t matter what the MRI results show, your pain is real.

When I left my second appointment with him, I got in my car and cried. I cried because I felt like I was completely out of options. I cried because he honestly thought the reason I was in debilitating pain was my weight. I cried because I didn’t know what the next step was. I cried because I didn’t feel like he believed me. And I cried because I was angry at myself for letting my heart get its hopes up.

There’s a reason pain patients get mad at every well-meaning friend who has a cousin whose dog was saved with a new medication that they think you should try.

There’s a reason we all get visibly angry when someone tells us we should see the doctor that their mom’s brother’s baby saw.

Because if we don’t get mad, if we give in, we end up getting our hopes up. We start to think getting better might be a real possibility. But most of the time, our hopes are dashed, exactly as we feared they would be.

And the only thing worse than chronic pain, is having chronic pain and being hopeless.

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

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

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

Little Evidence That Pain Contracts Work

By Roger Chriss, Columnist

Pain contracts are common. The Centers for Disease Control and Prevention recommends their use and many states all but require them. The contracts can be long, detailed and sometimes oddly demanding, as Crystal Lindell described in her recent column, "Signing a Pain Contract in the Age of Opioid Phobia."

In 2001, pain contracts and opioid use agreements were being promoted as “A Tool for Safely Treating Chronic Pain” by the American Academy of Family Physicians.

By 2011, Kaiser Health News was reporting that doctors were increasingly using contracts to protect themselves and to spell out the rules patients had to follow to reduce the risk of abuse and addiction.  

Some patients may end up signing multiple contracts with various providers, sometimes even watching video presentations about the content and intent of the contract.

So it seems reasonable to assume that pain contracts work, that research supports their use and establishes their benefits. Unfortunately, that is not the case.

The American Medical Association’s Journal of Ethics reported in 2013 that a review of opiate treatment agreements found “only weak evidence of a reduction in opiate misuse” in studies that were described as “methodologically poor.” The article also warned that “perhaps the greatest potential harm in the use of narcotics contracts is the inherent message to the patient that he or she can’t be trusted.”

Similarly, in 2010 the Annals of Internal Medicine published a review of a handful of observational studies rated as poor or fair quality, which found that opioid misuse was only modestly reduced in patients who signed contracts. In some of the studies, no benefit could be demonstrated.

In 2011, MD Magazine reported that “there is little evidence that these documents help reduce opioid misuse.” Steven King, MD, agreed with that assessment in the Psychiatric Times, writing that “there does not appear to be any firm evidence that these tools reduce the likelihood that opioids will be used in unintended ways.”

And as far back as 2002, the Clinical Journal of Pain published a study that stated “efficacy is not well established” for opioid contracts.

Thus, pain contracts have been researched for well over a decade with consistent results: they do little to reduce opioid misuse or abuse in any form.

Moreover, there is research and expert opinion suggesting that contracts can be harmful. For instance, in 2011 the Partnership for Drug-Free Kids reported that opioid contracts may damage patient trust and should not be used as a way to “fire” patients who violate the terms of the agreement.

In 2016, STAT reported on the unintended consequences of federal legislation promoting the use of such contracts, in particular how they could stigmatize and endanger patients who are struggling with substance abuse and addiction.

So why are pain contracts becoming more common and more complicated? And why is there a perception that they work?

Perhaps because chronic pain patients are in general compliant about pain medication, rarely share or sell their pills, and tend not to develop problems with abuse or addiction. In other words, pain contracts work because there is nothing for them to do.

The Johns Hopkins Arthritis Center tells us that patients who develop an opioid problem almost always have a prior history of substance abuse, and that stealing or forging prescriptions rarely occurs among patients. Another study found an opioid addiction rate of only about 3% in chronic pain patients.

Much like airport security scanners, pain contracts seem like a form of theater, a solution in search of a problem. But they are not just a benign if pointless exercise in paperwork.

Pain contracts unnecessarily lump together chronic pain patients and people suffering from drug addiction, and thus risk stigmatizing and misunderstanding two distinct groups. Chronic pain patients are not potential addicts or abusers-in-training, and substance abuse is a separate medical condition that requires a distinct approach from pain.

Perhaps there is a way to create pain contracts that actually help patients and clinicians. But until the evidence to support them is found, resources could be better used to improve treatments for chronic pain, as well as substance abuse.

Roger Chriss suffers from 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.

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.

5 Steps New Chronic Pain Patients Should Take

By Barby Ingle, Columnist

When I first experienced the symptoms of endometriosis, all I could think of was get to the doctor so this will stop. That’s what I did as a kid. I got sick and my mom took me to the doctor and made me better.

I knew something was wrong inside of me because of the blood and abdominal pain. But with endometriosis, you don’t really know for sure until the doctor looks to see what is going on.

I had never heard of endometriosis at the time of my diagnosis. Nearly 20 years later, it is no longer a rare disease with more than 200,000 new cases in the U.S. every year.  Endometriosis occurs when tissue that normally lines the inside of the uterus grows outside of it.  The disease is treatable, but it does require a medical diagnosis to rule out other possible causes of the symptoms.

I went through lab tests and imaging, but they didn’t show much. I had endometriosis cysts that had ruptured for years before the symptoms became an issue for me chronically. None of the providers ever warned me what they could mean.

When they finally did the laparoscopy, the uterus tissue was found on my ovaries, fallopian tubes, abdomen walls, and intestines. Once they did this procedure, the endometriosis got worse instead of better.

I decided to go to a larger city to get care at a major university hospital. I was the youngest patient there to ever receive a full hysterectomy after rounds of hormones and Lupron shots that didn’t work.             

1. Find the Right Doctor

What I learned from my experience with endometriosis was the importance of finding the right doctor. Each course of treatment is going to be different. Don’t always think the treatment you receive is all there is because that is all your doctor offered you.

You can make the choice to get the care you need. Don’t be afraid to do so. It’s your life. 

2. Consider Multiple Treatment Options

Don’t just go for the pain medicines or invasive treatments first. If a treatment you try does not work for you, stop and ask for something else. If your doctor can’t provide it, move on and find one who can. It is important for you to communicate with your providers, family and caretakers to create a treatment plan.

3. Take Responsibility for Your Treatment

We can’t live in our doctors’ offices between appointments. The person who is most responsible for your care is you.

It is up to you to follow the treatment plan and realize that it may take multiple and concurrent treatments to get everything under control.

4. Get Organized and Ask for Help

You may lose people in your life that don’t understand, are not supporting you or causing negativity. That is okay. It can be lonely, but we can only ask for help. The person we are asking is not obligated to help. Find people who can help willingly.

You will need to get organized, so you know what help to ask for. You may also realize the help you require needs to be split up among different people. If one person is all you can rely on, it may cause them to burnout.

Reach out to resources in your community, such as churches, community centers, high school and college volunteer programs, your insurance company resources, etc. Don’t limit yourself when it comes to getting help, and be thankful and willing to receive any help you do get from others.

I have talked about the importance before of keeping a journal to track symptoms, treatments and for your personal well-being. Once you have some data that helps you recognize your pain triggers, you can set expectations and plan accordingly. Then when pain flares pop up, you will be better able to handle them, have less stress, and better daily living.

5. Be Your Own Advocate

Finally, advocate for yourself. You will come to learn your body better than anyone on earth. You will know what you need. If insurance denies an option, appeal it. If a medication is causing you terrible side effects, report it to MedWatch at the FDA. 

Have the nerve to be heard and lose the fear of speaking up. The more you stand up for yourself and share your story, the better you and the chronic pain community will be. 

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. 

It's Time for Chronic Pain Patients to Act

By Alessio Ventura, Guest Columnist

I am a chronic pain sufferer who recently had multiple emergency surgeries due to sepsis infection after a shoulder replacement.

I have had 17 surgeries since 2008, including major back surgery, rotator cuff repair, biceps tendonitis, knee surgery and hernia surgery. Bottom line: my body is now wracked with arthritis and post-surgical pain.

I have tried several pain treatment modalities over the years, including Lyrica, Cymbalta, chiropractic, injections, NSAIDs, and acupuncture. The only effective treatment in my case has been the legitimate, professional application of opioid medicine by pain management physicians.

I have severe allergic reactions to NSAIDs, which kill 15,000 per year and send 100,000 to the hospital.  A friend of mine died from a stroke because of NSAIDs.

After my recent surgeries related to the shoulder replacement and subsequent infection, my wife had to travel to 25 different pharmacies before she finally found someone willing to fill my scripts for Oxycontin and Percocet.

This is not unusual though. Each month is a long trek to find pain medicine. What has happened due to government restrictions on opioids is a reduction in the supply of opioid medicine. The drug companies see the writing on the wall and are slowly trying to get out of the business.

ALESSIO VENTURA

At the same time, the government sets limits on how much a pharmacy can stock. That is according to pharmacists I have spoken to, but is denied by the DEA and FDA in response to letters I have written.

It truly is a nightmare. Each month, you have to go to pharmacy after pharmacy before you find a pharmacist willing to dispense the medicine, which pharmacists are under no legal obligation to provide. Many pain patients go into withdrawal each month as they search, while at the same time enduring intractable pain.

Most of us have tried every single alternative to opioids, but the anti-opioid hysteria paints a picture that there are better and safer therapies. That simply is not true. The only thing that works for many of us is an opioid-based medicine.

The madness is spreading. New Jersey governor Chris Christie has signed into law a bill that limits the first script for opioids to 5 days. After the four surgeries I’ve had since August, I was bedridden and could not visit a doctor after 5 days. They could not identify the infectious agent as they were unable to grow it in cultures. Eventually I was treated with 3 broad spectrum antibiotics, which in addition to killing the infection, also killed the "good" bacteria in my system, which caused severe fatigue and gastrointestinal side effects.

Many acute traumas, like when someone is shot or in a horrible car accident, will not provide for easy travel to visit a doctor to refill an opioid after 5 days, and it is currently illegal for a doctor to call in a script for controlled substances. This caused a run on opioid medicine in New Jersey as hospitals and surgery centers accumulated as much as they could, and with the cutback by drug companies, many people could not get their scripts filled.

My 85 year old mother in New Jersey had back surgery recently. My sister drove to 30 pharmacies -- starting in Bridgewater and working her way along Route 22 toward Newark -- and she was unable to get our mother’s scripts filled. My mother was in horrible pain and my sister had to rush her back to the ER. It was horrible. My sister broke down in tears at the ER as she explained her plight and the suffering of my mother.

There is a reason why army medics carry morphine to the battlefield. It is the only thing that has a chance to address severe acute pain.

In addition to supply limits, there is the prescription drug monitoring system. The government now tracks every single opioid that you legally acquire. If for whatever reason you find yourself away from home and cannot see your physician and you attempt to refill or get new pain medicine because of an injury, surgery or chronic pain, you will not be able to do it legally without first getting in touch with your doctor so they can coordinate care. Often this is not possible.

If you do get pain medicine while away without coordinating, you will be investigated and may be subject to arrest. Your doctor may also drop you from their practice. Your rights as a patient, especially your privacy rights and your right to seek pain relief, are now severely trampled.

Politicians are playing with fire as the opioid hysteria grows. More people will commit suicide rather than live with intractable pain, because politicians think they know more than doctors treating patients.

Who is going to listen to us? Politicians and some in the medical community conveniently conflate overdose data from the illegal use of opioids with legitimate use for intractable pain. They are also dismissive and try to tell us that we should try alternatives. For example, Lyrica is now being pushed by many, but it was developed only for a specific class of nerve pain, and possible side effects include suicide, weight gain, and a host of other things.

I almost committed suicide myself after being prescribed Lyrica and Cymbalta. I went from 190 pounds to 300 pounds, and had suicidal thoughts almost from the outset. When I told my doctors, they said, "Give it more time, the side effects will subside".

After the Lyrica and Cymbalta were stopped, I stayed on OxyContin and had bi-weekly testosterone shots. I lost all of the weight and the suicidal thoughts went away. It was a miracle.

There is a literal civil war occurring now between physicians who understand pain, and others who refuse to admit the truth about the efficacy of legitimate pain management via the use of opioids. Unless we all collectively speak up and scream loudly, meaning writing formal, respectful, but firm and forceful letters to our representatives, they will continue to step on us and cause our lives to be living hell.

It is time. Find out who your state and federal representatives are. Find out who your local, state, and federal health organization leaders are. Write formal letters, not emails or phone calls, to your representatives. After you write your letters, request meetings with your representatives and go to that meeting. Do whatever you can in a professional, respectful, but aggressive way in order to bring attention to our plight.

The time is now. Failure to act most assuredly means an end to our rights, a lifetime of pain, more illegal use of drugs, and in many cases, death.

Alessio Ventura was born in Italy, came to the U.S. at 17, and finished high school in Newark, New Jersey. He worked for Bell Laboratories for 35 years as a network and software engineer. Alessio has been married for 35 years and has 4 adult children, including triplets.

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.

9 Stupid Things People Say About My Health

By Crystal Lindell, Columnist

Below is a list of 9 things that are not helpful to hear when you are in the midst of debilitating chronic pain (and 11 things that are).

Fair warning, the language is strong — like my pain. Sorry about that.

1. Have you tried pot?

Piss off. First of all, I’m not allowed to. My doctor makes me take drug tests and if they find any trace of marijuana, they could cut off my opioids.

Second, it’s not like I can get Mary Jane at the CVS. Do I just randomly trust the local teen drug dealer to get me my medicine? For my body? That already hates me? That sounds like a great plan.

Third, pot is not a magical cure for everything wrong with everyone. It’s a plant. Not a potion.

2. You should lose some weight.

Fuck you. Losing weight is also not a magical cure all. And also, have you ever been on sleeping pills, pain pills and antidepressants, all at once? Because not only do those drugs make it hard to lose weight, they make you gain weight.

And OK, let’s pretend losing weight would magically cure me. I’m in pain right now, and I can only really lose a pound a week. So what am I supposed to do? Wait this out for a year or two until I get to the weight you suggest?

Oh, and also, screw you for telling someone who literally feels like they are dying that they should also give up one of the last good things in their life — delicious food.

Also, now I’m sick AND worried that you think I’m fat. Thanks a lot, asshole.

3. Just go to a chiropractor

I judge people who say this to me.

First, are you going to pay for it? Because my insurance sure as hell won’t. Also, it doesn't work for me. I don’t have a crick my neck, I have real issues. Issues chiropractors can’t solve. And personally, every single one I have ever been to has charged me hundreds of dollars for what basically amounts to the placebo effect.

4. What about acupuncture?

Screw you and your stupid needles. It doesn’t work. It’s the placebo effect. And again, my insurance company is not on board.

5. This is all part of God’s plan for you. You’re going through this so you can write about it and help others.

As the saying goes, Lord give me patience because if you give me strength I’m going to have to kill the next person who says this crap to me.

Okay, so assuming there is a God, He did not do this to me. Surviving constant debilitating pain is not part of some Almighty plan. And if it is part of God’s plan, then, well, I’m just going to say it — that is some bullshit.

6. You should give up gluten.

Boy bye. You want me to give up bread now too? Does it make you feel better to offer me this advice? Because if so, the only person it’s helping here is you.

Would you go up to someone who just had their foot cut off and condescendingly suggest that perhaps the solution to the blood coming out of their ankle is to just give up bread? No, because that would be insane. And asking me to give up bread is equally insane.

Gluten-free is also not a magic cure-all. On the other hand, the bread sticks at Olive Garden might be.

7. You really need to get off those pain meds. They’re so bad for you.

Sorry, but that’s bullshit darling. You know what’s bad for me? Being is so much pain that I literally can’t get out of bed for days on end. Being in so much pain that I can’t shower. Being in so much pain that I can’t work and lose my job. Being in so much pain that I want to kill myself. Those things are bad for me. Not the pain pills that help me live.

8. I’m praying for you.

Oh for God’s sake. And mine. Can you not? I mean, I get it, it makes you feel better. But let me just chill here DYING while I wait for your prayers to magically take effect. You think I haven’t been pleading with God for the last four years straight to make me better? Of course I have. Trust me, HE KNOWS.

And you telling Him isn’t going to change that. And it isn’t going to help me in any practical way. I mean, feel free to pray for me, just don’t let it be the only thing you do.

9. Well at least it’s not cancer.

Fuck you. Cancer sucks. But so does what I have. Asshole.

Some things you should say instead:

1.  I love you.

2.  I made you dinner. I’m bringing it over right now.

3.  I am driving you to your doctor’s appointment today. I know it’s two hours away. I’ll even pay for gas.

4.  I’m going to sit in on the doctor’s appointment and take notes and ask questions because I know you’re too sick to fully pay attention.

5.  Let me get that $50 co-pay for your prescription.

6.  I am coming over to clean your bathroom and do your laundry so you don’t have to constantly ask your mom to do it.

7.  Here’s some Taco Bell.

8.  I am coming over and we are just going to sit on the couch for hours, while you vent about how shitty it is to be sick every fucking day.

9.  I believe you.

10.  I know it sucks. I know it’s hard, but this world would be a much worse place without you and I really don’t want you to kill yourself.

11.  Here are two tickets to Paris.

The main difference between the first list and the second list? Most of the first list asks the sick person to do something, and most of the second list makes you do the something for the sick person.

It's harder, but much more effective. 

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

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

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

When Life Doesn't Turn Out Like We Planned

By Barby Ingle, Columnist

Most of my conscious thoughts start when I was 4 years old. I knew then who I was going to be when I was an adult, or at least thought I did.

My parents thought I would change my mind. My dad even told me, “No, you can’t be a cheerleader the rest of your life.”

They were sure I would have children that would pester me, like I did them. They were sure that we all grow up and become the adult that society makes us into. I am over-simplifying life, but that is what we do to stay happy, positive and lighthearted.

I knew I was made to motivate and inspire others for as long as I can remember. I knew I would be a cheerleader for life, that I wouldn’t have children of my own, and that I would be organized and hardworking. Those beliefs I held as a child, I still hold today, for the most part. I knew all of this at age 4 and all of it came true and more.

The “more” is the life I live in the present, at age 44. The road of life that brings changes, roadblocks, boulders, mountains, and stoplights is constantly changing and unpredictable. I didn’t know what tomorrow will bring.

One day, all the roadblocks hit at once. I was 29 and never imagined anything like the life I have now. It was devastating for a while. I eventually realized that this is just life. I have the power and choice to make mine happy and productive. Things are going to happen that are great, devastating, happy, sad, and every level in between.

It shouldn’t take 3 years and 43 providers to get a proper diagnosis. But it did. Everyone should be able to live the life that they want. But most of us can’t. According to one survey, only 1 in 11 people are working in their childhood dream job.

So, what do we make of life when chronic illness strikes? Is life over?  I think not. I found a way to change my new realities so that -- even in pain -- I was living my dreams.

I think it would be even easier if you are among the 10 of 11 people who didn’t realize your destiny. Maybe you have been doing it all along. No matter if you know your destiny or are making it up as you choose, in each moment the core of you is the same.

Let’s face the challenges of living with chronic pain with more positivity, optimism and motivation. When the world gives us lemonade, we make margaritas. When it takes away the chocolate, we find new ways to make dessert.

I know my message may be hard to hear if you are a pain patient. So I will share a few tips on how I keep myself moving, keep being ME, and hopefully inspire you to look at life in a new way, when it’s not turning out as planned.

First, I realized that I can’t control all the things that happen to me, but I can decide how I will react to what happens. I can plan and counter-plan, and then make the best of the new reality.

We all have our stories. That is what we are creating here on earth. Stories should be shared. Sharing them can be a decisive action. Some are mere ripples and others can be tsunamis, meant to teach us and those with whom we share a new life lesson.

No one story is sadder or happier than anyone else’s. Life and how we react to it is what matters. You can choose your path, make a new one, or follow others. It really is up to you.

Developing a chronic illness changes how we see life. Pain changes everything about life. When a roadblock comes your way, take a step back, look around to explore the whole picture, and decide how you’d like to respond.

We must learn to be brave facing our new reality. When something does shake us to our core, we must take the time to face it, understand the emotions of the situation, and realize that tomorrow can be a better day. Being honest with myself, especially when things don’t go my way, reminds me to hold on for one more day. Things will change, even in the darkest of moments. Hold on and you can make it through.

Take the time to understand yourself, learn your new boundaries, test those boundaries, and know that it’s not your fault. Life just is what it is. What can you do to make it better for yourself?

It is important to be open to new treatment options, new health discoveries, and new life experiences (or old ones being done in a new way). Hanging on to what could have been would make me bitter and resentful.

Finally, remind yourself constantly that pain won’t get you down forever. It takes work to create the life that you want, and you may fail at times. It doesn’t mean that you are worth less, that you are not going to be successful, or that you can’t change the outcome to something more positive.

How you choose to respond is what matters and that is what life’s all about.

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.

9 Lessons From 9 Years of Living with Chronic Pain

By Lana Barhum, Columnist

In September 2008, I was 32 years old, married, with a newborn and a nine year old, when I learned I had fibromyalgia and rheumatoid arthritis. Chronic pain and illness suddenly dominated my world.

That was almost nine years ago and I have learned a lot from this often unfair experience. It seems chronic pain and illness have much to teach us. Here are 9 lessons I’ve learned:

1) I am Stronger than I Ever Imagined

There was a time when I didn’t think I could ever meet the challenges imposed by pain and illness. But you don’t know how strong you are until your world comes crashing down and you are left to deal with the aftermath.

The human spirit and body have a high tolerance for pain.  Just when you think you cannot possibly live with it, you find you can.  I have had some pretty painful experiences – some so bad I wished for death.

But I am still here – alive and well. Because no matter what, I am stronger than this. And guess what? So are you.

2) Acceptance is Vital

I spent the first few years of being sick and in pain living in denial.  That choice took its toll on my physical and emotional health.  It was not until I truly accepted my health challenges that I was able to move past them and focus on having a somewhat normal life.

Acceptance also means you are an active participant in your health.  Take your medications and your doctor's advice, keep moving, and focus on bettering your mental and physical health.

I still have days where acceptance is a struggle, but I choose to remind myself what I am feeling isn't permanent.  

3) Don't Take Life So Seriously

As it turns out, there is more to life than being healthy.  You can still have a good, happy life even though you hurt and feel awful. 

There will be good days, bad ones, and even downright ugly ones. But you can still experience moments of happiness, enjoy life, and have meaningful relationships.  Illness and pain don’t define you or dictate your life.

Even at my sickest, I managed fill my life and my children's lives with joy and laughter.  Focusing on the good stuff, not taking life so seriously, and letting go of what you cannot control keeps you from shedding unnecessary tears.

4) Give Grief a Limit

The grief we often feel from chronic illness comes and goes. Like many of you, I have endured plenty of grief-filled moments.  I have been angry, sad, and even clinically depressed.

Grief is normal and natural, especially when your life is continually dominated by pain, sickness, and losses.  Give yourself permission to be angry about your pain, but don’t let those emotions take on a life of their own.

5) Life Can Be Unfair – Let Go

I know all too well that chronic illness and pain are unfair. If I could I have protected my health, I would have, but I couldn't.  And I couldn’t control the snowball effect that continued for several years after my diagnosis. All of it just simply goes back to life being unfair. It has nothing to do with health challenges.

I am learning to let go of what I wanted my life to be and to just focus on what it is now.  Things just happen – like a permanent injury or a chronic disease – that don’t have an explanation.   You can either focus your energy on dwelling on the unfairness or you can move on, let go and learn.

6) People Sometimes Let Us Down

I used to think chronic pain and illness were the worst things that happened to me, but it turns out they weren't.  Finding out that people don’t stick around when the going gets tough is far worse.

Some of my friends walked away.  My family didn’t understand.  And my marriage ended.  Before I got sick, I loved sharing my life with others.  But now that I am not sick and in pain daily, I don’t. People don’t always get that.  That makes maintaining relationships harder.

These days, I place my focus on creating a positive family life for my children and giving us the best life possible.  I don’t have a lot of time and energy to worry about others who don’t understand.   After all, this is MY life – pain, sickness and all - and I get to decide who is in it and who isn't.

7) This is Your Journey – No One Else's

After nine years, I am finally confident in my ability to manage this roller coaster ride alone.  Yes, I can sometimes rely on others to help and provide support, but at the end of the day, I decide the kind of person this life with pain and illness makes of me.

You may have all the support in the world, but you are the only one who can decide the direction this journey goes. Chronic pain can take so much if you let it.

Choose to make the best experience of this journey even when it hurts, and even it feels like you have got nothing left in you. Trust me when I say, “You have got this.”

8) Let Go of Your Fears

I was once afraid of what my life would become, but here I am nine years later and my fears were nothing but wasted time.  Interestingly, my health challenges took my life in directions I never anticipated and most of them have been good.

Don't miss out on the blessings of the present and future because you are dwelling on the past.  Stop being afraid because you can still have a bright future.

9) Never Give Up on Your Health and Happiness

My life changed the day my doctor said, "You have rheumatoid arthritis and fibromyalgia."  I went from being a healthy young mother to someone with an uncertain future.  I don’t take anything in my life for granted anymore and I treasure each day as the gift it truly is.

And the things that I thought I had to give up on – my dreams, watching my children succeed and grow into amazing human beings, and even finding love again – I was so wrong about.  All these things were possible despite chronic pain and illness. And they continue to be.

Lana Barhum is a freelance medical writer, patient advocate, legal assistant and mother. Having lived with rheumatoid arthritis and fibromyalgia since 2008, Lana uses her experiences to share expert advice on living successfully with chronic illness. She has written for several online health communities, including Alliance Health, Upwell, Mango Health, and The Mighty.

To learn more about Lana, 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 represent the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

Waiting for Effective Pain Care at the VA

By Steve Pitkin, Guest Columnist

As a veteran of Vietnam and as a chronic pain sufferer, I am so glad that Pain News Network has been a consistent voice for 100 million Americans who are basically being told to "go off and die somewhere" by the DEA, CDC and other government agencies who are supposed to be protecting us.

I started on morphine, clonazepam and temazepam in 2001, and was constantly monitored by a team of psychiatrists, psychologists and my primary care physician at the VA Medical Center in West Palm Beach, Florida. I did not get "high" from the treatment, but it gave me a quality of life that I could not have with other medications.

I was in a car wreck after I retired from the military in 1997. In September of that year, I was taking my youngest daughter to an orthodontist appointment when our vehicle was hit by a truck right after a rain storm.

The crash seriously injured my daughter, who was clinically dead for over 6 minutes before being brought back to life by a helicopter rescue team. She still suffers from a traumatic brain injury, as well as pain issues herself.

The accident worsened the already extensive injuries to my cervical spine and lower back area. I started to lose strength in both arms, and a civilian doctor attempted an ulnar nerve release. That worked for about a week, before the pain and numbness came back.

STEVE PITKIN

I eventually moved to Montana and was treated by a new primary care physician at the VA clinic in Missoula. He and his nursing team were not very helpful, so I asked to be transferred to a new doctor last year.

I was called back to the clinic and was introduced to my new physician. He took one look at my medical records and said, “The amount of painkillers you are on is borderline medical malpractice and we're going to have to get you off of them as soon as possible."

I nearly hit the roof when he said that. I had three failed right knee procedures, my cervical and spinal pain had grown worse, and here he's telling me that I was a victim of too many painkillers?

I have been pretty much bedridden since my dosage of morphine and the other medications were reduced. I have also been told I need to have both knees and both shoulders replaced. However, I was refused surgery on my neck by a neurologist who said, “If I were to operate on you, the amount of painkillers you’d need would kill you. You need to get off the morphine and benzodiazepines first, then come see me."

I told the neurosurgeon that I was an ex-Green Beret medic and had already gone through surgery several times with no serious side effects. But I was talking to a blank wall.

I went to see another primary care physician about the problems I was having with the lower dosage. He laughed at me when I asked if he could raise the dose. “You signed this paper saying you agreed to it," he said while waving the paper at me.

I didn't have any choice in the matter. I was told either to sign it or be cut off altogether.

I have written to both the House and the Senate Veterans Affairs Committees and was told there was nothing they could do to help me. When I found out that Montana Sen. John Tester was on the Senate Committee that helped the VA pass these measures, I was livid and told him so.

I even emailed President Obama and received a reply from him, saying something to the effect that it was important to keep heroin off the streets and to stop illegal sales of prescription pain meds.

There’s no doubt about that, but we who need those medications are being lumped into the same pile with drug abusers. The veteran suicide rate is estimated 20 a day and many vets, as well as civilian chronic pain patients, have been forced into buying illegal drugs and are dying from them.

I have always been a patriotic American and didn't hesitate to volunteer for the draft when I was 18. But if I knew that the government I served for so long would declare me an enemy, I think I never would have gone into the military. If not for my strong faith as a Christian, I would have killed myself long before writing this.

I can only hope that President Trump realizes that waiting in line for healthcare is not the only problem with the VA, and that wars injure and maim people for life.

Was it all really for nothing?

Steven Pitkin lives in Montana.

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.

Are We Near an Opioid Tipping Point?

By Roger Chriss, Columnist

We are fast approaching a tipping point in the opioid medication crisis.

Consider all that is happening:

The Centers for Medicare and Medicaid Research (CMS) wants to adopt the CDC guidelines as mandatory rules for prescribing opioids to Medicare recipients. CMS has proposed a daily ceiling on opioid medication as low as 90 milligrams morphine equivalent dose (MED) for millions of people.

The National Committee for Quality Assurance (NCQA) has proposed a daily limit on opioids of 120 MED for no more than 90 consecutive days.

The Pentagon and the Department of Veterans Affairs are also seeking greater restrictions on opioids, including a recommendation not to prescribe them for chronic pain to anyone under the age of 30.

States are clamping down on the dose and duration of opioid prescriptions. Maine has passed legislation severely restricting opioid prescribing, joining states like New Jersey, Virginia and Washington in tightly regulating opioids. Although there are exceptions for cancer pain and end-of-life care, people with chronic or intractable pain are being forced to taper their dose or replace opioids with less effective options.

Taxes on opioids are under consideration in New York and in California, which is also looking at prohibiting people under 21 from receiving oxycodone.

Rhetoric is reaching propaganda-like levels of hyperbole in the so-called war on opioids. The Hill recently ran a blog post with the headline “Chemical weapons of mass destruction on US soil.” It opens with the statement that “America is under attack. Chemical weapons of mass destruction are now in every city nationwide in the form of opioid drugs.”

The Huffington Post Canada has a similarly alarmist post claiming that “fully one-third of Americans who are given prescription opioids become addicted within two months.” It also claims that "pharmaceutical companies in Brazil and China are bucking the trend by running training seminars urging doctors to prescribe more painkillers rather than less.”

In an interview in MedPageToday, Dr. Daniel Clauw states that "I haven't prescribed an opioid for chronic pain in at least a decade," without ever clarifying what the outcomes were for his patients.

Predictions about the crisis are more dire. A recent article in MarketWatch headlined “America’s battle with drugs: Fatal overdoses spike among white, middle-aged men” said researchers at Columbia University have predicted that fatal drug overdoses “will peak at 50,000 annual deaths in 2017 before declining to ‘a non-epidemic state’ of 6,000 deaths in 2035.”

We are on the verge of an opioid tipping point, approaching the kind of prohibition the U.S. tried with alcohol almost 100 years ago. But rather than a Constitutional amendment, state governments and federal regulatory agencies are coming together like a swarm of angry bees to attack opioid substance abuse by clamping down on people who receive opioid therapy.

This is like trying to stop car thieves from driving recklessly by imposing new rules and regulations on safe drivers in their own cars.

The consequences of these restrictions are easy to see. People forced into rapid tapering to get their opioid dose into compliance with CDC guidelines are enduring dangerous side effects. People abruptly cut off from their pain medication are so overwhelmed by the pain of debilitating medical conditions that they contemplate or even commit suicide.

A column in STAT News recently discussed the “inhumane treatment” of pain patients, which Dr. Lynn Webster anticipated in his 2014 article, “Pain and Suicide: The Other Side of the Opioid Story.”

So why the race to restrict opioid medication? Is it so policymakers and legislators can say they did something? Are they playing defense and trying to pre-empt addiction? Does the rhetoric insulate them from facing the consequences for people with chronic or intractable pain?

Maybe the goal is to prevent addiction no matter the cost. But the cost is being born by the many people currently being successfully treated with opioid therapy.

This tipping point is a misguided step in a pointless direction. Even if it does help prevent a single case of substance abuse, it requires sacrificing the quality of life of thousands of people enduring the pain of chronic illness.

Worse, tipping points can happen very fast. But recovering from a tipping point and restoring balance in a system takes time. Which leads to a final question: How long will chronic and intractable pain patients have to suffer before policymakers and politicians see the harm restrictive opioid prescribing is causing?

Roger Chriss suffers from Ehlers Danlos syndrome and is a proud member of the Ehlers-Danlos Society. Roger is from Washington state, where he works as a technical consultant who specializes in mathematics and research.

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.

3 Things You Need to Know About Opioid Pain Meds

By Janice Reynolds, RN, Guest Columnist

A recent guest column on PNN suggested that we need to admit opioid medications are dangerous.  Yes, they can be dangerous, but the bigger question is why are they singled out for “special” treatment? 

All medications have the potential to be dangerous, yet opioids are the only class of medication being treated as if they are the gateway to Armageddon.  Due to “fake news” and “alternative facts,” many see opioids as bad for acute pain, as well as persistent pain.

This hysteria has even affected the use of opioids to treat non-pain medical conditions -- one being as a first line therapy for potential heart attack or heart failure. Opioids cause blood vessels to dilate and lower blood pressure; getting more oxygen to the heart, decreasing anxiety, and reducing the risk of a heart attack. 

Chemotherapy drugs and bio-therapies are all very dangerous medications, causing a variety of injurious side effects, as well as secondary cancers in some cases.  Generally, when given in a hospital setting, precautions are needed to prevent others from being exposed to them. Typically, these are used for cancer, but they also have non-cancer uses and for some pain syndromes; such as methotrexate for rheumatoid arthritis. 

After a cancer is cured or in remission, many patients are left with pain disorders caused by the cancer or medication.  Because they no longer are seeing an oncologist, many recovering cancer patients are not able to get their “chronic pain” treated, especially with opioids.

Non-steroidal anti-inflammatory drugs (NSAIDs) such as ibuprofen have long been known to be dangerous. They are black boxed by the FDA for cardiac events and gastrointestinal bleeding. Nephrologists will tell you they are the leading cause of chronic kidney failure. They can also potentiate heart failure. 

These side effects are not from overdosing, but can occur even when taken as prescribed.  Most side effects are not even included on the label of over-the-counter ibuprofen. It has been estimated 20,000 people a year die from ibuprofen. 

As a colleague said to me years ago, “If I prescribe an NSAID and the person dies, nothing will happen to me.  If I prescribe an opioid and they die I will be investigated.”

Safety is a huge issue with any medication, especially in older adults. As we age, our metabolic and elimination systems become less effective, and there is an increase in comorbid conditions that frequently results in more medications. 

The Beers Criteria has been around since 1991, with the last revision in 2012.  It lists medications which should not be used or rarely used by older adults.  These are medications that are inappropriate, potentially dangerous, and can worsen serious health conditions.  The list is evidenced based. NSAIDs are on it (and have been for a long time) while opioids, except for Demerol and Darvon (no longer on the market), are not. A few other medications used for pain, such tricyclic antidepressants (TCAs) are on the list as well. 

Taken in excess, acetaminophen (Tylenol) can damage the liver, heart medications can permanently damage the heart, and blood pressure medication or any drug which causes sedation can lead to death.  

Drug Interactions

Overdose deaths involving opioids are nearly always in someone who is opioid naïve or taken in combination with other medications or alcohol. Interactions between alcohol and other medications can frequently cause problems and may even be fatal.  

If alcohol and opioids are taken together and a problem develops, why is the opioid held at fault? Medications which cause sedation are the likeliest culprits to cause a fatal interaction with opioids. Alcohol interacts with nearly all medications, some worse than others. 

Other medication interactions can increase how a drug works or decrease its effectiveness.  NSAIDs and many other non-opioid pain medications have a higher risk profile for interacting with other drugs. TCA and anti-arrhythmics have a fatal interaction potential, for example.  Pregablin (Lyrica) has 26 potential major interactions.  NSAIDs interact with several medications, including antidepressants (SSRIs) and anticoagulants.

Opioids do not by themselves cause addiction. However, some people have the potential to become addicted to them, especially if they have an addictive personality.  Many other medications can also lead to addiction, such as benzodiazepines, barbiturates, amphetamines (e.g. Adderall), and caffeine.  Alcohol and nicotine are the leading potentially addictive drugs.

Physical dependence should never be confused with addiction, as they are two separate issues.  This misunderstanding about opioids and addiction has been long standing.  Many of us who have cared for dying patients have had a family member worry about their loved one becoming addicted, even when days away from death.

Opioids have a long history of relieving pain and it is untrue there is a lack of evidence concerning their use.  One of the difficult things with any medication, including opioids, is the fact that not everyone responds to them the same way or at the same dose.  For example, while some will respond to opioids for fibromyalgia or migraines, most do not.

The most insulting, cruel, demeaning and wrong thing someone can say to a person in pain is “You only think it works for you.”

There is no pain syndrome called “chronic pain.” And separating non-cancer pain from cancer-related pain is irresponsible and morally wrong. 

From the Journal of Pain Research:

"These claims are primarily philosophical, rather than medical or physiologic. As mentioned, pain mechanisms do not discriminate between cancer and noncancer pathophysiology. Patients with cancer or those without cancer have essentially identical pain-generating physiologies, and thus the same mechanisms for the development of their pain (eg, inflammatory pain in a cancer patient will be the same physiological process as in a noncancer patient). Further, cancer patients are living longer and their original pain generators become chronic pain in and of themselves, little different from patients without cancer."

So why should we have this discussion? Three reasons:

1. It is said we should accept erroneous beliefs and statements because this is what “everyone” believes based on opioid phobia, and to not do so would make us appear stupid. But who is being stupid here?
2. To emphasize the fact that no other medication is being restricted and villainized the way opioids are. This is based on opioid phobia, and the prejudice and bigotry shown towards people in pain.  Benefits and risks are a discussion between the patient and a knowledgeable provider, and should not be the purview of regulators, the media, politicians or opioid-phobics. 
3. Everyone needs to be knowledgeable about the dangers associated with medications. Few providers do a good job catching potentially dangerous interactions.

The worst case scenario is that people in pain are dying and some are being arrested after being denied effective treatment in emergency rooms.

I repeat: The benefits and risks of opioids need to be left to the patient and their doctor.

Janice Reynolds is a retired nurse who specialized in pain management, oncology, and palliative care. She has lectured across the country at medical conferences on different aspects of pain and pain management, and is co-author of several articles in peer reviewed journals. 

Janice has lived with persistent post craniotomy pain since 2009.  She is active with The Pain Community and writes several blogs for them, including one on cooking with pain. 

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.