Why I’m Fed Up with the Healthcare System

By Nyesha Brooks, Guest Columnist

I'm so fed up with the healthcare system. I was diagnosed a year ago with a chronic invisible illness known as fibromyalgia. I also have depression and anxiety. I was relieved to finally have a name for what I was going through.

My journey with this illness has been pure hell. I live with chronic pain every day of my life. I had to resign from my employment of 8 years because I could not bear the pain any longer.

Suicide is a BIG concern when people have fibromyalgia. I had to reach out to the crisis hotline due to feeling like nobody understood. The pain is so unbearable, constant fatigue, numbness in your body parts, and crippling back pain at times. You also get brain fog that can cause memory loss and mood swings. It’s all isolating.

While there is no cure for fibromyalgia, doctors say it’s not fatal. But if you live your life in pain every day, it will cause all kinds of health problems that can lead to death.

My issue with the doctors today is they don't listen anymore and they stereotype everyone as opioid abusers. I’ve never done drugs or abused medications in my life. Even when I'm in severe pain, I still take only what is prescribed for me. It's almost like they want you to go home and suffer.

The problem with fibromyalgia is there's no detection or extensive research on it. There’s not a lot of information out there. To the naked eye I look fine and healthy. However, that’s not my reality. I have nerve damage. When I'm home I wear something very comfortable and I'm in bed most of my day. We are very sensitive to loud sounds and light. I listen to a lot of relaxing sounds on Youtube such as the rain falling.

NYESHA BROOKS

I have big help from my family that assist me throughout the day because I have limitations. I take all kinds of medications that I keep in a bag. The medication doesn't work at all. It just makes you very drowsy and increases the pain that you’re already in. Due to the opioid epidemic, we're restricted from getting the right medications.

I’ve been to the ER so many times because I get flare ups that can last all day or weeks. I'm on high blood pressure medicine due to being in severe pain. I'm telling you I don’t wish this on my worst enemy.

I have been fighting for my social security disability for a year now. I was rejected the first time and now I’m waiting on my appeal decision. It’s very upsetting because I'm a mother and I just want to take care my children.

Plan B is not even an option for me because I can't handle a day-to-day job. One task burns me out or takes me hours to do. My therapist says because I'm always stressing, I'm not going to be here to see my benefits. Today my doctor looked at me and suggested because of my age I should go back to the work world. I'm fed up. My doctor bases my reality on his research. How is research more accurate than my truth?

I met so many fibro warriors from a support group on Instagram and we all have similar stories with the healthcare system. I need help getting this awareness out because fibromyalgia matters and is real. The doctors need to take our illnesses seriously and listen. One rejection can cost a person their life. We need love, support and understanding.

Nyesha Brooks lives in South Philadelphia.

Do you have a story you want to share on PNN? Send it 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.

A Pain Platform: What Patients Should Look for in 2020 Candidates

By Crystal Lindell, PNN Columnist

I met my boyfriend, who also is a chronic pain patient, at a local county Democrat meeting a little over a year ago. We’re both crazy liberals, but he always says he knew it was love when I turned to him during the meeting and said, “If Donald Trump made hydrocodone over-the-counter, I’d vote for him in 2020.”

I have a political science bachelor’s degree and spent hours in my college classes lamenting about the surge of single-issue voters. Why would anyone vote for a presidential candidate just because they were pro-choice?

But now that I’m sick and depend on pain pills to function, I have to tell you, I kind of get it. If there were a candidate who supported my right to pain medication, I’d go work for their campaign.

Unfortunately though, there aren’t any candidates who really seem to represent the things pain patients need — not yet anyway. Both major parties have pushed for limits on opioid medication, regardless of whether your doctor thinks you need it. And both have ignored the pleas of pain patients for access to alternative treatments.

Here’s a list of 13 things that pain patients should be looking for in 2020 presidential candidates — a “Pain Platform” if you will. I’m not sure any candidate will truly live up to this ideal, but we won’t know until we ask.

1. Eliminate regulations for prescription opioids

This is the big one, obviously. And the most important. In a misguided attempt to respond to the opioid epidemic, there has been a surge in the number of regulations for opioid prescriptions that includes everything from limiting the amount a patient can get to arresting doctors who prescribe too much. That needs to stop.

2. Require insurers to fully cover alternative pain treatments

This one is also obvious. If they truly believe that opioids shouldn’t be the only pain treatment, then they need to support other treatments financially. And specifically the $0 co-pay is so important.

Insurance companies may think that a $30 co-pay for a physical therapy session isn’t that much, but if you need three sessions a week for three months suddenly you’re looking at more than $1,000. That’s too much. Especially for pain patients, who tend to have less income than the general population.

3. Provide research grants for new pain treatments

Even patients who use opioids know they aren’t a cure-all. But unfortunately, there aren’t many good alternatives for treating pain. That needs to change and requires research into new therapies that could help. If the government really wants people to use fewer opioids, they need to research alternatives that actually work.

4. Legalize recreational marijuana at the federal level

Personally, marijuana doesn’t help me much with pain. But for some people it’s exactly what they need, which is why it needs to be legalized. And yes, I think it needs to be legalized recreationally, because patients shouldn’t have to go a doctor and get a prescription to treat their pain.

5. Make kratom legal in all 50 states

I personally have found kratom to be extremely helpful for treating my chronic pain. In Illinois, I can get it over-the-counter, so I don’t have to drive over an hour each way to see a doctor every time I need a refill. Unfortunately, several states have made kratom illegal and some are considering it. That needs to change.

6. Forgive all medical debt

I have great insurance through a great job and I still have literally thousands of dollars in medical debt — all from co-pays. I can’t catch up because anytime I make any progress on it, I have another flare and rack up more bills. We live in the richest country in the world. Healthcare shouldn’t be what kills your credit.

7. Launch Medicare for all

I shouldn’t have to be over a certain age or legally disabled to get good health insurance. Everyone should have access to that. It’s not hard.

8. Make it easier to get disability while still working

The problem with disability is that you have to be out of work for a long period of time before you get your benefits. That’s impossible for anyone who’s responsible for their own bills. Yes, they give you back pay if you eventually qualify for disability, but landlords aren’t typically the type of people who will let you back pay them. You should be able to apply for disability while you’re still working so that you have steady income throughout.

9. Make disability pay a living wage

You’re barely allowed to make any income if you collect disability. But disability alone isn’t enough to live on in most places. People who depend on it shouldn’t also be relegated to poverty.

10. Allow people on disability to get married without penalty

This is a big one. As it stands right now, if you’re currently getting disability and Medicare you can lose those benefits if you get married because they count your spouse's income toward your income. Losing both kills your independence and can drastically increase your medical bills.

We should be encouraging love for people who are already dealing with so much, not discouraging it.

11. Require all government services for seniors to be provided to the disabled

This one is mind-blowing to me and I’m shocked that it’s not already the case. If you’re too sick to work, you are effectively retired no matter what your age. And you should have access to the same services seniors receive, such as transportation and other assistance. Some people lose their health early and basing benefits solely on age unfairly punishes those people.

12. Fund a public awareness program for invisible disabilities

I cannot read one more Facebook story about some poor person being screamed at for using a handicap spot because they “don’t look sick.” Lots of sick people look perfectly healthy. I look perfectly healthy, but I’m really sick. You can’t judge someone’s health by how they look. A public awareness campaign about invisible illness would go a long way toward making the lives of disabled people better.

13. Provide more medication-based addiction treatment centers

I know, I know. Patients aren’t addicts. But guess what, a lot of people who get addicted to opioids start with medications for legitimate pain. We shouldn’t abandon them. Providing more medication-based treatment centers is the first step toward helping them. There is a real need for those treatment centers in rural areas, which have been the hardest hit by the opioid crisis. The more addicts we help, the less we’ll have to deal with politicians blaming pain patients for the opioid crisis. 

What else would you add to the Pain Platform? What’s your wish list for 2020 candidates? Maybe if we all share our ideas, they’ll finally start listening to us. 

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

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.

Is Fentanyl a Weapon of Mass Destruction?

By Lynn Webster, MD, PNN Columnist

Usually we think of bombs, missiles, rockets and dangerous chemicals as weapons of mass destruction (WMD). However, the military website Task & Purpose recently reported that James McDonnell, who heads the Department of Homeland Security’s WMD division, wants to classify fentanyl as a WMD.

McDonnell proposed this in a February memo to then-DHS Secretary Kirstjen Nielsen. The drug’s “high toxicity and increasing availability” make it “attractive to threat actors seeking nonconventional materials for a chemical weapons attack,” according to the memo.

There isn’t much evidence for classifying fentanyl as a WMD, but McDonnell’s suggestion could still find support for reasons that have more to do with politics than science.

According to federal law, weapons that can kill or severely injure "through the release, dissemination, or impact of toxic or poisonous chemicals, or their precursors" fall into the category of weapons of mass destruction.

McDonnell thinks fentanyl fits the definition. It is not clear that he is correct. And he neglected to mention that fentanyl has a legitimate medical use, too.

History of Fentanyl

Fentanyl is a powerful synthetic opioid typically prescribed to patients in acute pain or during surgeries. According to data from the National Center for Health Statistics, 48 million surgical inpatient procedures were performed in the United States in 2009. Most of those procedures involved administering fentanyl intravenously as an analgesic. 

Fentanyl was developed in 1960 by Belgian chemist Dr. Paul Janssen. The patent for fentanyl was obtained under his company name, Janssen Pharmaceutica. Fentanyl was first approved by the Food and Drug Administration in 1968 and introduced into the marketplace as an analog for Demerol, with plans that it would be used only for palliative care.

In 1978, I coauthored with my professor mentor, Dr. T.H. Stanley, a manuscript titled “Anesthetic Requirements and Cardiovascular Effects of Fentanyl” that described the use of high dose fentanyl for cardiac anesthesia.

The anesthetic technique we described allowed patients to undergo coronary artery bypass and valve replacement surgery more safely and with greater success because of fentanyl's unique pharmacologic properties. The technique was considered a seminal event in anesthesia for cardiac surgery.

Since the publication of that paper, millions of people have successfully undergone heart operations. The advance of using fentanyl in anesthesia may have helped some of those patients survive their heart operations.

It wasn’t until the late 1980s that testing was done for delivering fentanyl through a transdermal patch for the treatment of cancer-related pain and noncancer chronic pain. Later, oral transmucosal delivery of fentanyl was made available for cancer breakthrough pain. Each of these new uses of fentanyl exposed millions of Americans to the drug without evidence of an inordinate degree of harm if it was used as directed.

In contrast, nonpharmaceutical fentanyl has caused enormous harm. But as illicit use of the drug proliferates, so do myths about its dangers. McDonnell’s memo fits into an overarching narrative that bestows almost magical properties on fentanyl.

What's Behind the Fentanyl Panic?

The opioid crisis is real and the use of illicit fentanyl is often lethal. But mischaracterizing the effects of fentanyl may be only a political maneuver. 

In New York Magazine, Sarah Jones wrote about a 2017 Bloomberg News story that claimed fentanyl “is so potent that even a small amount — the equivalent of a few grains of salt — can be lethal.” 

“This isn’t really true,” wrote Jones. “You can’t get high or become ill simply by touching fentanyl, but police departments often claim otherwise. They report dramatic, but varied, symptoms that don’t mesh with established scientific evidence about fentanyl and the way it’s absorbed by the human body.” 

As Jones points out, Homeland Security’s WMD division has experienced a decline in funding because of the Trump administration’s focus on immigration and building a wall at the border. One way to reclaim some of that money for the WMD division is to build a case against fentanyl. 

Other drugs, such as ricin, pose greater risks and are probably more lethal than fentanyl as WMD’s. However, the word "fentanyl" packs a far larger emotional punch than ricin does because of the public's familiarity with it.  

WMDs are meant to kill the maximum number of people is the shortest amount of time. On the other hand, fentanyl -- even when it is laced with heroin -- is not intended to kill people. Drug cartels want to make money. Their goal isn't to murder their customers

Protecting Access to Legitimate Fentanyl 

The opioid crisis is now largely driven by nonpharmaceutical fentanyl and fentanyl analogs, not prescription fentanyl. Solving the opioid problem will require greater efforts to reduce the illegal production and distribution of illicit fentanyl. 

Could fentanyl be weaponized and used to attack citizens? Maybe, but not easily.  

The Pentagon realized the harm that an opioid attack could cause when the Russian military used aerosolized carfentanil -- a highly potent fentanyl analog --  against terrorists who had taken over a theater in Moscow in 2002. The drug killed dozens of innocent hostages and their captors, and it put the U.S. on notice that opioids could be weaponized.  

Before we classify fentanyl as a WMD, we need to know what that would mean for its legitimate use during surgery, or for cancer and chronic pain patients. Access to the medication for the treatment of pain must be part of the calculus in assessing if a relatively safe and effective drug should be classified as a WMD. 

Lynn R. Webster, MD, is a vice president of scientific affairs for PRA Health Sciences and consults with the pharmaceutical industry. He is a former president of the American Academy of Pain Medicine and the author of “The Painful Truth.”

You can find Lynn on Twitter: @LynnRWebsterMD. 

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

A Pained Life: Fearful Fortunes

By Carol Levy, PNN Columnist

I love fortune cookies, but have no faith in the fortunes themselves. I opened a cookie recently and out came this message: “Listen to what you know instead of what you fear.”

I am going through a bad time recently. For 19 years I have had a spontaneous remission of the worst of my trigeminal neuralgia pain.

The trigeminal nerve now seems to be regenerating and it worries me. I get sporadic tingling sensations in the numbed areas of my face, the result of a procedure done in 1979. Within the last few months, the spontaneous pain has also started coming back, not in the same way, and only one or two flares were horrific.

I am very fearful all the pain will return.

My new neurologist specializes in headaches. My situation is an unknown to him. He is very nice but is essentially throwing drugs at me, a new one each time the one he just prescribed doesn't help or gives me terrible side effects. He is throwing things at the wall and hoping something will stick. I fear nothing will.

I finally found someone who specializes in trigeminal neuralgia and facial neuropathy, my disorders. She asked for a copy of my medical records so she can decide if she will accept me as a patient.  I fear she will refuse. Or if she agrees to see me will be unable to help — like almost all the others.

A woman I know has fibromyalgia and Complex Regional Pain Syndrome (CRPS). For years she has been on high dosages of Dilaudid and another strong opioid. Her doctor decided he would halve her dosages of both. She was appropriately fearful of being tapered. But to her astonishment she found she could tolerate the reductions. She is happily doing just as well on the lower dosages as she had been on the higher amounts.

A lot of what we go through is often based on fear. It is legitimate. We know what the pain is like, we know what the medications do, we know what we can and cannot do. A lot of our choices are fear based: It hurts when I do this, so therefore I will never do it again.

I am able to do so much more, feel so much better when I am on this particular medication and this particular dosage, so I will refuse any changes. I am used to this doctor/physical therapist/specialist being involved in my treatment, even though I am not always happy with them, so I will stay anyway.

It is hard to give up the fear. Pain is not like painting a room a new color and then deciding you don’t like it. You can always just repaint. But change what I am used to doing to deal with the pain? That is not so simple. My pain may increase and be even more unbearable, more daunting.

But what if I take the chance and find I am okay?

Our minds and bodies have been programmed to do all we can to avoid pain. Fear is one of the ways we deal with it. As a kid you touch a hot stove and feel the excruciating pain of a burn. You very quickly learn to fear a hot stove, the fear keeping you from hurting yourself in the same way again.

It is almost counter intuitive to heed the fortune: “Listen to what you know instead of what you fear.”

What we know is why we fear. Maybe, at least for us, the fortune should read: “'Listen to what you know, but take the chance of fear anyway.”

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.

What It’s Like to Be Forcibly Tapered Off Fentanyl

By Emily Ullrich, Guest Columnist

Although I have been on this chronic intractable pain, illness and medical refugee train for nearly a decade, I’ve been lucky to have the love and support my husband, family and wonderful people around the world that I've met through this shared anguish. They lift me up and allow me to lift them, when I can.

Right now, I'm holding onto them in utter panic, because they’re all that I have left.

About four years ago, I met a palliative care doctor, who had taken the time to read my 3-page health history. I take that paperwork with me to every visit to the ER or new doctor, so they can fully understand the things that I have tried, what worked, and what made things worse. No doctor had ever looked at it, until she did.

She approached me with zero judgment, and 100% sympathy and empathy. She actually cared about what I'd been through. I broke down sobbing, because I could finally let my guard down. I told her how my husband had to take a day off from work every month to drive me five hours and three states away, to see the only doctor I could find who was willing to treat my complicated needs. She told me I could see her instead. That was a tremendous gift.

Last year I began to sense that there was growing pressure on her about prescribing high doses of opioids, so I asked if I should worry about her cutting my meds or passing me off to another doctor. She reassured me that she would do no such thing.

Then came my visit one month later. I knew something was awry, because there was a case worker present for my appointment. My suspicions were confirmed when I was told the dose of my fentanyl patch would be tapered significantly lower. I was thrown into a tailspin.

With my doctor’s help and willingness to prescribe the meds and dosages that I needed, I had been able to achieve about a 4/10 on the pain scale, daily. I was able to participate in life again and do things that I love, like cooking, getting dressed up to go on a date with my husband, and other things that healthy people take for granted.

I was furious and traumatized that I was going to have to give up living my life. I still am.

On my next visit to see my doctor, she dropped another bomb. She told me that I had to choose between anti-anxiety meds and pain meds. Ironically, she was the one who put me on a higher dose of Xanax to help me cope with anxiety and insomnia. I felt betrayed.

I would not wish the hell of abruptly and simultaneously tapering off fentanyl and Xanax on anyone.  Even when I had a higher dosage, I still had pain flares that were not properly controlled. But since the taper began, I now have them daily.

I want this to be very clear: Fentanyl is a necessary medicine for many people with high pain levels. I have tried every other extended release medication known and none even touched my pain.

Fentanyl has gotten a bad reputation and patients who take it live with heavy stigma because the media usually report on fentanyl overdoses without distinguishing between illicit fentanyl and properly prescribed legal fentanyl.  

I would like to make a plea to the media: Stop the ignorant reporting and do your due diligence. By not distinguishing between legal and illicit fentanyl, you are causing even more strife for those of us who need the relief that only fentanyl medication brings.

I have still not gotten a clear reason for my doctor's decision to force a taper on me. I fear if I prod too much, she will totally cut me off or advise me to see someone else. This is making the struggle even worse, because even though we still have a pleasant relationship, I'm hurt and confused about this. I suspect it is being forced upon her.

As I wrote this, I had to take breaks for hours, sometimes days, because my pain is escalating to such a level that anxiety and insomnia are ravaging my mind and body. I have been in withdrawal (which, by the way, does not mean I am addicted to my medication, it means I'm physically dependent on it) for about four months.

As my medicine has been tapered, my life has crumbled. I get about two hours of sleep every five days. At times I get uncontrollable head shaking, leg kicking, arm flailing and vocal ticks. My pain gets so bad that I develop a full-body rash and migraines that last for days.

I don't know what is real and what my brain has concocted. I hold nonsensical conversations, like my grandparents did when they developed dementia. It is embarrassing and terrifying.

One night, while counting down the minutes until I could take my next dose of meds, I passed out from pain and anxiety, which scared my husband so bad that he called 911.

I hope that insurers, pharmacies and especially government officials who are infringing on doctors' ability to treat their patients, might read this and see that forcing tapers on patients is dangerous. There have already been many suicides because of them.

A gap is growing between many doctors and their patients. We know this is not “What's best for us.” It is actually a twisted way to make more money off the sick and vulnerable, forcing us to replace a medicine that is effective and safe when used responsibly with drugs that are ineffective, expensive and dangerous.

Emily Ullrich lives with Complex Regional Pain Syndrome (CRPS), chronic pancreatitis, endometriosis,  interstitial cystitis, migraines, fibromyalgia, osteoarthritis, anxiety, insomnia, depression, and other chronic illnesses. She is also a writer, filmmaker, activist, advocate, philanthropist and comic. As she is able, Emily devotes her time and energy fighting for pain patients’ rights.

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.

When Will Forced Tapering of Opioids End?

By Lynn Webster, MD, PNN Columnist

“Larry” recently wrote to me asking for advice. He describes himself as "virtually crippled totally" after having his opioid medication cutback.

"I am being forced tapered and the PA I now have will not budge one inch on the weaning, as he calls it. I hate him. I have never had a more callous doctor in my life," Larry wrote.

"What does one do in my situation? Blow my brains out? A[n] intentional overdose? I have two beautiful dogs that depend on me and a son who needs me. I have to stay here on planet Earth although I want out of here so bad I beg God to kill me every morning noon and night. It is my daily prayer."

Unfortunately, Larry is only one of many patients who are struggling to be heard by their providers. Physicians are under government pressure to adhere to the CDC’s 2016 opioid prescribing guideline.

Although the CDC designed its guideline as voluntary, government agencies interpreted it as a mandate instead. The Drug Enforcement Administration has pursued doctors who prescribe a level of opioids that exceeds the guideline's recommended daily limit of 90 MME (morphine milligram equivalent), even when no patients have been harmed.

According to Maia Szalavitz, writing for Tonic, Dr. Forest Tennant was one of the few physicians who still were willing to prescribe high-dose opioids for the sickest pain patients. The DEA raided his California office and home, allegedly because the agency had reason to believe some of his patients were selling their medication.

There simply was no evidence of that. But as a result of the raid, Dr. Tennant retired from clinical practice.

Szalavitz wrote that the raid "terrifies pain patients and their physicians, who fear that it could lead to de facto prohibition of opioid prescribing for chronic pain and even hamper end-of-life care."

Dr. Mark Ibsen in Montana had his license suspended by the state medical board for allegedly overprescribing opioids. According to Dr. Ibsen, the DEA warned him "he was risking his livelihood and could end up in jail if he kept prescribing." A judge later overturned the board’s decision.

As Dr. James Patrick Murphy, a Kentucky-based pain and addiction specialist, told the Courier-Journal, "many well-intended doctors are unfairly arrested 'all the time' in the hunt for those who recklessly contribute to patients' addictions and fatal overdoses."

As of this writing, The American University Law Journal plans to publish an alarming article by Michael Barnes, JD, about the raids on America’s top physicians.

Although few physicians are incarcerated for prescribing high dosages of opioids, many of them are threatened with losing their licenses to practice medicine. Doctors and pharmacists told a POLITICO survey that they felt enormous pressure to limit their prescriptions for painkillers. Their fear of the consequences of noncompliance with the CDC guideline exceeded their responsibility to treat patients with severe pain.

Second Thoughts About CDC Guideline

On April 1, the attorneys general of 39 states and territories wrote a letter on behalf of the National Association of Attorneys General to Dr. Vanila Singh of the U.S. Department of Health and Human Services. The letter expressed concern with the draft report of the Pain Management Best Practices Inter-Agency Task Force, which recommends changes in the CDC guideline to end the forced tapering of patients.

The attorneys general said "it is incomprehensible that officials would consider moving away from key components of the CDC guideline." Additionally, they expressed their hope that the report would be revised "to clearly state that there is no completely safe opioid dose."

Yet on April 9, the Food and Drug Administration issued a medical alert warning doctors not to abruptly discontinue or rapidly taper patients on opioid medication, because it was causing “serious harm” to patients, including uncontrolled pain, psychological distress and suicides.

Now it seems the CDC may be moving in the same direction.

Dr. Daniel Alford, a Professor of Medicine at Boston University, wrote a letter to the CDC asking it to address the misapplication of its guideline with a "public clarification." He was writing on behalf of Health Professionals for Patients in Pain, and 300 healthcare professionals signed his letter.

The CDC's response, published on April 10, echoed the FDA's statement. CDC Director Dr. Robert Redfield observed that the CDC guideline "offered no support for mandatory opioid dose reductions in patients with long-term pain." He reinforced the fact that the guideline was voluntary and that doctors should use their knowledge of their patients to determine which dosages were appropriate for them.

Dr. Redfield wrote that “CDC is working diligently to evaluate the impact of the Guideline and clarify its recommendations to help reduce unintended harms." And he agreed that "patients suffering from chronic pain deserve safe and effective pain management."

STAT News points out that the overzealous enforcement of the CDC guideline was indeed causing patients harm. "Denying opioids to patients who have relied on them — sometimes for years — may cause some to turn to street drugs, thereby increasing their risk of overdose," STAT warned.

According to The Washington Post, "Many patients have claimed that long-term use of the drugs is all that stands between them and unrelenting pain, and that they can take the medication without becoming dependent or addicted."

The CDC and the FDA now admit the guideline has been misapplied and mainstream media outlets are beginning to pick up the story. The question is: Will the DEA stop pursuing doctors who treat pain patients with levels of opioids that exceed the guideline's recommendations?

For Larry and other pain patients who have been forcibly tapered, the answer may be a matter of life and death.

Lynn R. Webster, MD, is a vice president of scientific affairs for PRA Health Sciences and consults with the pharmaceutical industry. He is a former president of the American Academy of Pain Medicine and the author of “The Painful Truth.”

You can find Lynn on Twitter: @LynnRWebsterMD. 

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.

You're as Healthy as the Food You Eat

By Barby Ingle, PNN Columnist  

It’s important that patients with chronic pain conditions maintain a healthy lifestyle, including getting enough sleep, exercising and eating healthy foods. I know this is so much easier said than done.

You are what you eat, right? We hear this often growing up, but what does it really mean? If I have a cupcake or a slice of cheesecake, am I going to live through the night? Over course I am. But day after day of poor eating will have long-term health consequences. And when our health is poor, other aspects of life are also likely to suffer.

Patients with chronic pain and illness typically lead a more sedentary lifestyle. Because we are less active and burn off fewer calories, we are at greater risk for developing other medical problems such as cardiovascular disease, diabetes and osteoporosis. I myself have been dealing with poor posture and sudden weight gain and loss. I fall easily and have trouble gripping and holding onto things. 

One area we have more control over is what we eat and who we are eating with. When I’m at home, my spouse cooks meals for me. I used to just let him choose what he wanted to make because I was just happy to have a meal prepared for me.

I have been really working on my eating habits since being diagnosed as "skinny fat" last year. I had to change where I am eating, how I am eating and what I am eating. Although my husband doesn’t eat the same food as me most of the time, my healthier habits have rubbed off on him.

I make a grocery list for what I want to eat, instead of just eating what he prepares for himself. I also now eat about 6 times a day instead of 3 bigger meals and a snack. 

Hopefully those around you are supportive of you making changes in your diet. When they see you make a conscious effort to choose your own meal and set your own portion limits, they may be empowered to pay attention to their own habits. You don’t have to say “no” to everything, just keep indulgences under control, eat smaller portions and be mindful of what you are eating.  

As a former athlete, I know nutrition is crucial for good performance outcomes. But when I got sick, I let all of that go. I had more important challenges to focus on, or so I thought.

Nutrition plays a role in chronic pain and how we prepare our bodies to cope with the stress.  Make sure your doctor is doing frequent blood testing to check for any deficiencies you may develop. A friend of mine developed Hypokalemia, a potassium deficiency that led to a psychological breakdown and two mental hospital stays.

Medications can also affect your liver, kidneys and digestive system. Blood testing can help prevent this from getting out of control and let you know if dietary supplements are needed to counter poor vitamin absorption.  

Maintaining good nutrition and hygiene may be difficult, but are very important. My new reality is that I am disabled and need to ask for help. I have to pay attention to what I eat, my hormones, my vitamins and everything I put on and in my body.

Eating is an important part of our lives and healing is a process. I have to control the parts of my life that I can to be able to live the life that I want.  

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.

An Open Letter to the CDC Center for Injury Prevention

By Richard “Red” Lawhern, Guest Columnist

Dear Dr. Robert Redfield and Dr. Debra Houry,

By its passive refusal to conduct a thorough review of the impact and outcomes of its 2016 opioid prescribing guideline, the CDC’s National Center for Injury Prevention and Control is actively causing harm to hundreds of thousands of pain patients.   

Deserted by their doctors in a hostile regulatory environment, many are going into the streets seeking pain relief.  Possibly hundreds may already be dead of illegal fentanyl poisoning or suicide.  Military veterans, in particular, face draconian restrictions on the availability of safe and effective opioid medication therapy.   

And all for no good reason!

I suggest with every intention of professional and personal courtesy, that government organizations can no longer stand aside from this centrally important issue.  Such a stance will make you and other federal agencies accessories to state-sanctioned torture and negligent homicide.  That is unacceptable.   

As a former military officer, I respect a well-tried motto that I urge each of our regulators to take on as their own:   

      Lead, follow, or get out of the way! 

It has become clear that the CDC guideline must be immediately withdrawn for a major rewrite.  In its present form, the guideline is unjustifiably biased against opioid pain relievers, factually incomplete, in error on basic science, and founded on untested assumptions that do not hold up under any degree of careful scrutiny.   

The guideline is directly responsible for a vast regulatory over-reach by DEA and state authorities that is driving doctors out of pain management and denying safe and effective pain treatment for hundreds of thousands of patients.  

The CDC guideline has been publicly repudiated by no less an authority than the American Medical Association. Over 300 medical professionals have called for a rewrite of the guideline from the ground up. And a recent draft report by a federal task force calls for a reorientation of the guideline towards individualized patient-centered care, not the one-size-fits-all approach of the CDC. 

Multiple published papers have conclusively invalidated the guideline’s contention that there is a maximum dose threshold of risk for opioid addiction and overdose.   

Likewise, contrary to assertions in the guideline, there are presently no validated long-term studies to support the use of non-opioid analgesics and NSAIDs, or the off-label prescribing of anti-seizure and anti-depressant drugs to treat pain. No Phase II or Phase III trials have been published on "alternative" techniques such as acupuncture, massage or meditation.  And there are no trials which directly compare these techniques to opioid therapy under documented protocols.  Alternative treatments can at best be regarded as adjuncts to be added to analgesic or anti-inflammatory treatment.  

Published papers also demonstrate that criteria used by CDC and other federal agencies to identify risk of opioid abuse or overdose have very limited predictive accuracy. These faulty criteria are now being used by Prescription Drug Monitoring Programs (PDMP’s) to "flag" patients presumed to be at risk, who are in fact not at risk but are being denied pain treatment due to false alarms.  

Opioids, Overdoses and Demographics 

We can now take this narrative a step further.  I have compiled overdose data directly from the CDC Wonder database and from the Agency for Healthcare Research and Quality Data. This data focuses specifically on deaths directly attributable to opioid-related overdoses or suicide. The chart below shows rates of mortality by age group from 1999 to 2017.

GRAPHICS BY RED LAWHERN

Note that the highest rates of opioid-related mortality are among youth and young adults, while the lowest rates are among people over age 55.  Moreover, mortality in youth has skyrocketed by 1,800% over 17 years, while remaining relatively stable in people 55 and older.

The chart below documents the contrast in opioid prescribing by age group in 2016.  Unsurprisingly, older adults and seniors are much more likely to experience chronic pain and are prescribed opioids at a rate nearly double that of young adults. These two demographic trends contradict the idea that opioid overdoses are linked to prescribing.  They’re not and the evidence proves it. 

An updated analysis report further summarizes major themes we found in the overdose data.  The report reveals that “over-prescribing” of medical opioids was never a significant driver in opioid overdoses. There is no cause-and-effect relationship between rates of opioid prescribing versus rates of opioid overdose. In fact, it can be argued that in states where prescribing rates are highest, the trend may be in the opposite direction. 

The downward sloping red line in the chart below is called a "regression" line.  This is the trend line for the overdose and prescribing data from all 50 states in 2016. If there were a connection between high rates of opioid prescribing and overdoses, we’d expect the regression line to be pointing upward, not downward.

Overdose mortality rates are actually lower in high-prescribing states! 

One plausible explanation for the downward sloping line is that in states where prescribing has been more suppressed, patients are being driven into unsafe street markets or are committing suicide when overwhelmed by pain.   

These findings have previously been published in the blog of Dr. Lynn Webster, former President of the American Academy of Pain Medicine and author of "The Painful Truth." 

The implications of this analysis are glaring: the National Center for Injury Prevention and Control has created a fatally flawed guideline which actively increases injury rather than reducing it.   

Taken in sum, the evidence reveals that key assumptions on which the CDC guideline is based are simply and conclusively wrong.  Continued refusal to reevaluate the guideline is morally, ethically, medically and legally wrong. The 2016 CDC guideline on opioids must be retracted.  NOW! 

(Editor’s note: Dr. Redfield is CDC Director and Dr. Houry is Director of the CDC National Center for Injury Prevention and Control. A longer version of this open letter has been sent by email to other federal agencies and officials.)

Richard “Red” Lawhern, PhD, has for over 20 years volunteered as a patient advocate in online pain communities and a subject matter expert on public policy for medical opioids.  Red is co-founder and Director of Research for The Alliance for the Treatment of Intractable 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.

Can Pain Be Used to Treat Pain?

By Jeanne McArdle, Guest Columnist

“Can you cure pain with more pain?” was the provocative question posed last month by National Public Radio’s Invisibilia podcast, “The Fifth Vital Sign.”  

The show features the story of Devyn, a 16-year old former gymnast living with chronic pain. Devyn broke the end of her thighbone and required surgery, but the injury never fully healed and her pain was spreading. She was diagnosed with “amplified pain syndrome” and enrolled in a rehabilitation program for children at a Kansas City hospital that combines intense physical therapy with psychotherapy.

Put simply, Devyn was taught to ignore her pain by being exposed to more of it.

The resounding backlash from the chronic pain and illness community was swift and fierce, blowing up NPR’s social media feeds with charges of endorsing torture and demands to pull the episode. An apology for “triggering” pain patients from podcast hosts Hanna Rosen and Alix Spiegel served only to generate more ire.

NPR’s Public Editor, Elizabeth Jensen, stepped in on March 15, publishing an opinion piece that parsed individual points of contention while somehow missing the main one: Patients were outraged that NPR provided free publicity to treatment programs that put children in tremendous pain on purpose.   

The original pain rehabilitation program profiled in the Invisibilia podcast operates out of Children’s Hospital of Philadelphia. It is based on founder Dr. David Sherry’s belief that we do not accept pain as a natural part of life anymore. We focus too much attention on pain and try to eliminate it — often making it worse.  

Is there scientific evidence to support the theory that paying too much attention to pain causes it to spread elsewhere in the body? I couldn’t find any. I believe Sherry’s idea is just woo and bunk. Widely accepted pain research shows that once nerves are sensitized it takes less and less stimuli to create more severe and widespread pain. It is important to break that cycle and to treat the pain, before moving forward with physical therapy and other treatments.

Sherry’s program takes the opposite approach. It rests on the unproven idea that flooding the patient with pain will reset her brain’s response to pain. Take away the patient’s pain meds, force her to engage in many hours of hard exercise each day, subject her to other painful stimuli, and her brain will no longer process pain as dangerous. It will become bored with pain.

Would you want someone with such an extreme view of pain to be in charge of your pain management program? Would you want him in charge of your child’s pain management program?

On March 20, the Society for Pediatric Pain Medicine weighed in with an open letter to Cara Tallo, Invisibilia’s Executive Producer:

“(We) are deeply concerned that your episode promotes the misconceptions around pediatric pain and undermines the diligent scientific discovery by scientists, doctors and clinicians over the past several decades.

Pain is NOT simply a matter of attention and psychological state of mind. It does not just respond to putting children in intense/more intense pain and teaching them to push through.

Instead, it requires a clear understanding of its complex nature and treating the physical, biological, and psychological issues carefully and simultaneously, in a delicate dance that sometimes may be harder in the beginning.”

The Invisibilia podcast followed Devyn as she participated in the pain program at Children’s Mercy Hospital in Kansas City, where the goal was “to put Devyn in as much pain as they possibly could.”

Devyn and other patients are told to jump in and out of a pool as fast as they can for five minutes straight. One of the girls struggles to swim and jump in and out because she’s lost the use of one side of her body. She is cut no slack.

During the podcast we hear Devyn’s trainer deny her asthma medication when she has trouble breathing. The trainer tells Devyn to stuff a tissue up her nose and continue to exercise even when she springs a nosebleed. We hear Devyn vomit from exertion. Apparently, exercising to the point of vomiting is common; there are barf bags set up around the gym. Devyn is told to “push through” no matter what. 

The girls who enter this rehabilitation program have, we’re told, completed extensive medical testing to rule out underlying medical problems. But people in the pain community know how often diagnoses are missed. It can take years to find a doctor who even knows what to look for. We know how much harm can be inflicted by inappropriate therapy. 

The program claims to have precautions in place so that patients with Ehlers-Danlos syndrome (EDS), a condition that causes fragile connective tissue and autonomic dysfunction, don’t injure themselves. Having EDS myself, I know that the essence of this program — pushing people through pain — is inappropriate for anyone with EDS.

I have personally met and have spoken online to other EDS patients who have been through Dr. Sherry’s program and emerged from it with more injuries and pain than they had when they began. There are even reports of people who have come out of his program with PTSD. It is easy to understand how that might happen. 

Even if these programs worked some of the time for some people, they are bound to harm others. Pain is complicated. We are only beginning to understand its mechanisms.

Attention is not a switch that can be turned on or off. Attention can take many forms. Attention can be nonjudgmental. It can be loving. It can be kind. It can be curious. It can be gentle. Choosing the proper form of attention to bring to your pain can be a tool for dealing effectively with it. Attention is not the blunt, malign force that the podcast describes.

We have lived through decades-long diagnostic delays while enduring brutal and futile treatments. We have been blamed for our symptoms only to discover they were beyond our control. We know how easy it is to harm, how difficult it is to heal, and how much the larger community wants simple solutions to our complex problems.

The backlash against NPR from the pain community was actually a plea to “First do no harm.” Programs that deny pain have permanently, irreparably harmed countless pain patients and chronically ill people. Don’t present them as solutions. We deserve better and children with widespread pain deserve better. 

Jeanne McArdle lives with Ehlers-Danlos syndrome. She administers a regional support group for people with EDS in Central NY and has served on the boards of several nonprofits. Jeanne is a former technical writer and earned an MPS in Communication from Cornell University.

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

Finding Validation at the Migraine Symposium

By Mia Maysack, PNN Columnist

It was an honor to attend the annual Migraine Symposium and Awards Dinner held by the Association of Migraine Disorders (AMD) this past weekend at Brown University in Providence, Rhode Island.  

At the symposium there were more than 25 experts covering topics from breakthroughs in migraine research, emerging technology, holistic treatments, medicinal cannabis and one of the most painful conditions known to mankind: cluster headaches.        

As someone who lives with multiple brain diseases and disabling chronic intractable pain, sharing space with migraine community members and healthcare professionals that sincerely care made the occasion extraordinarily meaningful to me.

I was introduced to many exceptional human beings, each of whom I could easily write a column about, but for now I'd like to shine the spotlight on the President of AMD, Dr. Frederick Godley.  Not only is he an extraordinarily intelligent and kind soul, his positive attitude illuminated the entire room

#ShadesforMigraine

Let me share one of the very first moments of validation I'd ever experienced as a person living with migraine and cluster headaches caused by post-bacterial meningitis. Having inquired with many healthcare professionals as to whether or not I am living with a traumatic brain injury (and been disregarded by each and every one), my eyes fill up with tears while rejoicing when I write that although I am not a patient of Dr. Godley or being treated by him, he acknowledged that possibility.  

At the end of the day, it doesn't do those of us coping with severe ailments much good to fixate on any specific diagnosis. What's most important is we find a way to manage whatever hand we are dealt. But the validation helps. There have been moments when I've begun to question my own sanity. There's no possible way my head could be hurting *this* bad or for *this* long. Most others are in persistent disbelief as well, even though I crack jokes that if I were to ever wake up pain free, then I must be dead!

I am grateful that I am not and tremendously excited about the future possibilities in migraine treatment. Considering that for about 30 years one of our only options was a small class of medications, now is the best time to get involved in the migraine community because we're moving forward with such momentum. There have been funds granted for much needed further research.

PTSD and Psychedelics

Some other thoughts about the symposium:

The very significant validation that post-traumatic stress disorder (PTSD) is a common underlying element of pain or even a potential cause of it. Think about it. If your own body feels as though it is fighting and turning against you on a daily basis, how are we to live without stress or experience any sense of security? 

It's not as common as it should be to go into a doctor's office and be addressed as an entire person. In my experience it has been: “Let's do what we can to mask the symptoms and settle on normalizing what’s left.” That is not treatment. Unacceptable.

The same small class of medications that are one of the only options for people living with ongoing head pain have a similar chemical makeup to Psilocybin, a psychedelic compound found in mushrooms. Psilocybin and LSD are beginning to have more credibility as potential options in treating Trigeminal Autonomic Cephalalgia (TAC) or cluster headaches. There's hope they could be helpful in treating other conditions as well, despite the fact they've got an overall reputation as being hazardous drugs. 

Ever come across a rule that just seems absolutely ridiculous? That's kind of how I feel about the current classification of these substances. We all know it only takes one person to essentially ruin things for everyone else. As a result, most people think this kind of stuff only causes harm and chaos.  No one is suggesting that anybody should go to their local drug dealer and score a bag of whatever -- we’re discussing potential. It all boils down to the science and our focus here is solely medicinally related.

Much like we've been exploring the use of CBD without THC, we are moving forward with learning more about these other substances -- potentially without the psychedelic or hallucinogen properties. Perhaps they're needed to induce relief. And if that is the case, in what micro-dosage could this possibly be prescribed in a safe, effective way?     

Although I am not using them, I've known others who’ve had successful results. In the proper way and for the right reasons, I have also chosen to advocate for them, as there seems to be far less complications with more natural options than those from the pharmaceutical realm. Each approach has its rightful place and there's no one-size-fits-all for everyone. 

Mia Maysack lives with chronic migraine, cluster headaches and fibromyalgia. Mia is the founder of Keepin’ Our Heads Up, a Facebook support group, and Peace & Love Enterprises, a wellness coaching practice focused on holistic health.

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

What About Pain Patients Who Don’t Get Better?

By Roger Chriss, PNN Columnist

The standard narrative of the opioid crisis focuses on pain management run amok. From duped doctors drugging patients into dependency to pill mills pumping painkillers into vulnerable communities, the narrative assumes chronic pain is a treatable ill.

“Looking back it’s clear that using opioids to treat chronic pain — backaches, bum knees and the like — might well be considered the worst medical mistake of our era,” wrote Haider Warraich, MD, in a recent opinion piece in The New York Times.

But what about the people who don’t get better?

There is a world of difference between “bum knees” and major diseases and disorders. From ankylosing spondylitis to sickle-cell disease, sometimes the diagnosis is permanent and the clinical course is progressive and degenerative. Care for such conditions is supportive and palliative. Affected people do not get better.

This distinction, between conditions like low back pain that often improve or resolve on their own versus progressive and degenerative conditions like Charcot-Marie-Tooth disease or multiple sclerosis, is often overlooked.

Patients treated with analgesic therapy, opioid or otherwise, are often judged on their level of improvement.

“Despite the limited improvement of clinical outcomes, most patients keep their long-term opioid prescriptions. Our results underscore the need for changes in clinical practice and further research into the effectiveness and safety of chronic opioid therapy,” concludes a study of chronic pain patients recently published Pain Medicine.

Left unsaid is anything specific about the study’s 674 patients’ diagnoses or expected clinical outcome. There was a tacit assumption that the patients should have improved and stopped taking opioids, an expectation that therapy should have been restorative and not just palliative. There is also an implication that non-restorative therapy is somehow inferior and not getting better is in effect a failure.

Often, however, that “failure” is the best that modern medicine can offer. Treatment does not necessarily mean clinical improvement and sometimes it doesn’t even mean halting progression of a disease. Instead, it may be about improving patient safety, such as the use of balance training for people with Meniere’s disease or peripheral neuropathy in the feet, or about improving activities of daily living, such as the use of assistive technology for people with muscular dystrophy or Ehlers-Danlos syndrome.

The list of chronic, progressive and degenerative disorders is long. The very complexity of the human body makes for a vast number of points of failure, from genetic mutations that cause inborn errors of metabolism to immune system dysfunction causing rheumatoid arthritis or lupus. There is the aftermath of chemotherapy, surgery and trauma, too.

MalaCards Human Disease Database has almost 20,000 gene-based disease entries. The National Organization for Rare Disorders includes over 1,000 diseases in its database. Though each condition may be rare, the total number of affected people reaches into the millions in the United States.

A common thread in current coverage of the opioid crisis is that people with chronic pain can and will get better, especially if they stop taking opioids. But a recent study of patients who stopped opioid therapy shows mixed results.

“Half of the former opioid users reported their pain to be better or the same after stopping opioids; however, 47% of the sample reported feeling worse pain since stopping their opioids,” researchers found. “As the pendulum swings from pain control to drug control, we must ensure that the response to the opioid epidemic does not cause harm to individuals with chronic pain.”

There is tendency not to see chronic pain patients as individuals and to lump them all together into one group. This may explain the mixed results in many recent studies on pain management, including on medical cannabis. The patients’ diagnoses and expected clinical outcome are often ignored, which in turn leads to overlooking the value of a therapy that may seem ineffective but is actually helpful.

The reality of long-term pain management for chronic, progressive and degenerative conditions is that there are no great options. It's all trade-offs, risks and benefits, and a careful balancing of medical needs. Sometimes there is little if any improvement. But if you're facing a lifetime of chronic pain, that little bit can still be worth a lot.

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

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

Do You Know How To Say No?

By Ann Marie Gaudon, PNN Columnist

Such a tiny word. Such a powerful one. For toddlers and teenagers, saying “No” comes easily. Then something changes. Some of us as adults would rather stick pins in our eyes than say no to anyone. That’s a problem. An even bigger problem if you suffer from chronic pain

You likely know the drill. Your body is screaming in flared pain -- red flags for rest and self-care. But you don’t say no to your neighbour who needs help with a chore. You don’t say no to babysitting your nieces at the last minute. You don’t say no to that extra job your boss asks you to stay late for. 

The inability to say no is directly linked to our need for approval from others. Why do we crave their positive opinion? There are many reasons, but for our purposes let’s just talk about chronic pain patients and some of the reasons we can’t say no.

The consequences of unrelieved pain can include but are not limited to:  depression, anxiety, impaired function, financial distress, sleep and appetite disturbances, identity erosion, social isolation, relationship conflict, demoralization, and feelings of helplessness and hopelessness. They can all disconnect you from your family, friends, work and social life.

In a herculean attempt not to relinquish “who we were” before the pain, we don’t say no. Our hearts scream out: “I’m still a son/daughter! I’m still a partner! I’m still a parent! I’m still a good friend! I’m still a valued employee!”  We instinctively try to stay in the group in order to survive. We must be accepted and approved at all costs!

What are the personal costs of not saying no?

Anxiety

We only have so much time and energy, and yours is steadily eroded by other people’s demands. You may begin to experience anxiety attacks. Constant worrying and catastrophizing can lead to heart palpitations, sweating, headaches and other physical manifestations.

Depression

Constantly giving in to the demands of others and consistently falling behind in your own life can lead to feelings of low self-esteem, a major contributor to depression. If you spend your time catering to others without focusing on your owns needs, you can lose track of what you want and who you really are. This loss of identity feeds into anxiety and depression.

Relationship Breakdown

In the beginning, saying yes all the time may be appealing to you and to others. But as time goes by hidden resentments may surface or you may feel manipulated.

If you cannot say no, you’re not being honest about your feelings for fear of hurting someone else’s. You may not even be honest about how much pain you are in.

Honesty is a cornerstone of healthy relationships. Saying yes when you truly want to say no isn’t being honest – to yourself or anyone else.

Stress

Too much stress isn’t healthy and can be devastating to pained bodies. It’s exhausting trying to please everyone all of the time. Exhausted bodies are stressed bodies. You’re more likely to experience low grade colds or illness, have trouble sleeping, and feel more pain.

The inability to say no is problematic to your mental and physical well-being. It serves no one – not you or others – to be consistently saying yes when your body says no. You are not being true to yourself or to them.

Others cannot see your pain or understand what your needs are, so they are not given a chance to respect them. It’s really a lose-lose situation.

How does a pain sufferer get themselves out of this unrelenting pattern? Here are four tips I’ve learned:

1. Make Your Pain Visible

If you were in a wheelchair, your disability and limitations would be obvious. But when your pain is invisible, others may need to be educated. It’s time to fess up about what you are capable of and what you are not. Your health demands it.

You’ve likely heard this before: If you don’t take care of yourself first, you will never be able to take care of others. Think of the flight attendant teaching us how to use our oxygen masks in case of emergency. You always put your own mask on first to get the oxygen you’ll need to help others. It’s just like that with pain. When your body says no, it becomes you first.

Some people feel shame in telling others that they suffer from chronic pain. They feel broken or weak and don’t want others to know. This is an erroneous self-belief. It creates an invisible boundary between yourself and the rest of the world.

You = bad, broken. Everyone else = good, whole.

This is emphatically untrue. You are not different from the rest of the world. Everyone suffers in some way, shape or form. It may not be from physical pain, but it will be from something else.

It may not be the easiest conversation you ever have, but it’s one of the most important ones.  Some folks provide educational material about their pain condition to help explain how debilitating it can be. You might be pleasantly surprised when you give people a chance to understand. They may embrace you with compassion, respect your limitations and treat you accordingly – just as you would for a loved one.

If you don’t say no and make your pain visible, they’ll never see the authentic you. They only see a façade: You wearing a “yes” mask. Is that fair to either of you? 

2. Create Boundaries  

When you’re learning how to say no, it’s easy to get caught off guard so be prepared. Sometimes well-meaning loved ones will try to coax or guilt you into doing something you really don’t want to do. Have a narrative ready. It could be something like, “I know I look fine, but my joints are hurting so much it’s getting hard to move. I’m just exhausted and I need your support right now.”

Or perhaps something like: “Sorry, I cannot help with that because I’m in a pain flare today and need to take care of myself. I’d really like to help when I am able to, so next time around, ask me again.”

Boundaries for support from other people need to be firm. If not, you risk no one taking you or your pain seriously.

3. Simplify Your Social Life, But Don’t Abandon It  

What about social occasions? How do you handle an impromptu invitation from a friend when your body is telling you to stay put? Living as well as possible with chronic pain is all about constant adaptations.

Perhaps there is something you could attend if someone else did all of the driving?

Maybe you can go to a potluck dinner, but your contribution is store-bought?

Loved ones want to get together for a meal? Dining out is a terrific choice because there’s no cooking or clean up involved.

Can’t keep up with your friends at the gym? Let them run on their treadmills or go to cardio class while you walk around the track. You can all meet up later for a stretch and a green tea.

Family wants to go bowling, which is something you’re not physically capable of? No need to miss out. Let them bowl as you sit and chat with them as they take their turns. You might be pleasantly surprised your inner circle is just happy to have you there and that they’ve come to understand your limits

4. Yes, But…

How do you RSVP to an invitation when you have no idea how you will feel at that time?

How about this: “Thanks, I would love to come but there is a chance that it may be a flared pain day for me. Can I confirm with you the day of, if that’s okay?” This is a regular of mine.

It may turn out to be a low pain day, in which case I’m attending.  If it’s a medium pain day, I’ll put my psychotherapy tools to work and go. If it’s a very high pain day, I am staying home.  

Framing it this way makes it much easier for me to bow out at the last minute. I do this both socially and with work-related meetings. If I’m not able to make it, we re-book so they know I really do want to attend, I just need to be well enough to do it.

There are some very special and rare occasions where I will say yes even if my body says no, such as a wedding or special birthday event. In that case, I will not book myself for anything or anyone for a couple of days after so that I can fully recover.

Say no when necessary. Simplify and adapt to your needs when necessary. You first. It’s not selfish, it’s self-compassion. Chronic pain patients could all use more of that. Seek help if you need some.  Most therapists are well-versed in self-compassion.

Ann Marie Gaudon is a registered social worker and psychotherapist in the Waterloo region of Ontario, Canada with a specialty in chronic pain management.  She has been a chronic pain patient for over 30 years and works part-time as her health allows. For more information about Ann Marie's counseling services, visit her website.

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

Epidural Steroid Injections Won’t Solve Your Back Pain

By David Hanscom, MD, PNN Columnist

A lawsuit was in the news recently about a Kentucky doctor who refused to give his patients pain medication unless they had epidural steroid injections.

Really? I have run across this scenario many times throughout my 32 years of performing complex spine surgery. It is a huge problem from several perspectives.

First of all, epidural steroid injections don’t provide lasting relief for any indication. This is particularly true when they are recommended for neck or back pain. There is not any research paper indicating a significant benefit. Yet they continue to be administered at a high rate.

I prescribed them sparingly for acute ruptured discs, where the natural history is for them to resolve without surgery most of the time. The steroids do knock down the inflammatory response that occurs around the disc material, so it buys some time and sanity while the body heals.

I also used them occasionally for spinal stenosis (constriction of the nerves). Pain in the arms and legs would usually improve for a short period of time.

What was unexpected was that many patients that I had on the schedule for surgery would cancel because their pain would disappear when they utilized other tools to calm down the body’s stress hormones. The more favorable hormone levels changed their pain threshold.

Epidural steroid injections as a stand-alone treatment might be of some benefit, but they aren’t going to definitively solve your chronic pain. Whatever benefit that a patient may feel probably comes from the systemic effects of the drug. Steroids make everything feel better, but it’s unfortunate that there are so many severe side effects.

Let me share what happened to one patient.

Ralph was one of my favorite patients. I worked with him for over 20 years. I haven’t met a more well-intentioned human being. By the time I first met him, he had undergone over ten surgeries and was fused from his neck to his pelvis. He never had relief from his chronic back pain. I had to perform a couple of major surgeries just to get him standing up straight.

I worked hard with Ralph on a structured rehab approach with some modest success. I lost track of the number of phone calls. He had a lot of stress at home and was helping to raise a grandchild. In spite of his pain, he kept moving forward.

Then he broke through and had a dramatic decrease in his pain and better function. Ralph wasn’t pain free and his function was permanently limited because his spine was fused. But he was stable on a relatively low dose of opioids. We were both pleased.

I didn’t hear from Ralph for many years until he called me from his local hospital. He was quite ill. His entire spine was severely infected. His primary care physician, who took care of his meds, had retired. No one else would take care of his needs and he was referred to a local pain clinic, which performed a high volume of spinal injections. They would only prescribe opioids if Ralph agreed to the injections.

Not only are injections ineffective for back pain, they really don’t work in the presence of 12 prior surgeries. Ralph’s back was a mass of scar tissue, rods and bone without much of a nerve supply. There is also less blood supply in scar tissue and a much higher chance of infection. Where would you even place a needle if the whole back is fused?

We admitted Ralph and had to open up his whole spine, which was infected with several hundred milliliters of gross pus. It took another two operations to wash him out and get the wound closed. He eventually did well, and we continue to stay in touch.

Ralph had to undergo a proven ineffective procedure in a high-risk setting in order to obtain pain medications that were effective. He became seriously ill, underwent three additional surgeries with the attendant pain and misery, and the cost to society was over a hundred thousand dollars. I rest my case. 

Dr. David Hanscom is a spinal surgeon who has helped hundreds of back pain sufferers by teaching them how to calm their central nervous systems without the use of drugs or surgery.

In his book Back in Control, Hanscom shares the latest developments in neuroscience research and his own personal history 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.

A Pained Life: Accepting the Unacceptable

By Carol Levy, PNN Columnist

I was recently talking with a friend who has chronic pain and, like me, has had to deal with many bad side effects on top of the pain.

Helene has a facial pain disorder. Unfortunately, as a consequence of her last surgery, she developed problems speaking and swallowing. She has repeated injections to help with her voice, but the swallowing problem Helene says “is permanent." 

I can't believe that. “Have you had a third or fourth opinion?” I asked.

“Yes, and a fifth and sixth opinion. There is nothing more to be done,” Helene explained. “But I have adjusted to it and accept it.”

Her last statement felt almost like a punch to my gut. I am happy for her. But truth is, even after 40 years, I do not accept the pain, disabilities and disfigurement the many procedures and surgery have wrought in my life.

It is hard to adjust to change, especially when it affects our natural abilities and body functions. Even harder still when it is the result of medical or surgical mistakes. Or a surgery or treatment that went fine but caused more damage.

Acceptance certainly makes life more bearable. And yet, I have never been able to reach that state.

My pain started in 1976. By now I should be well over having to accept and adjust, but instead I am still angry, frustrated and upset when the pain strikes. When I try to read or write, it exacerbates my eye and facial pain and becomes more then I can bear. The facial paralysis, a side effect of a surgery in 1979, is a hateful reminder of the terrible surgery that caused it.

Children sometimes look at me strangely and stare. I get it. I look different. If I was a child I would also probably look and wonder, “What happened to that lady?”

But It is the adults who feel a need to point me out or comment about me, within earshot, that hurt the most.

My cervical spine was severely injured during one operation. As a result, I have 12 screws and 2 clamps placed in my neck to literally hold it up. When I saw a man look at me, tap his companion's shoulder, point me out and make a slashing motion across his neck -- appearing to indicate to his buddy that I tried to slash my throat -- I wanted to crawl under a table.

Then the question becomes, “How do you adjust?” Or for people like me, “Why haven't you adjusted and accepted?”

As I think about the people I know who have chronic pain, I realize the difference between those who have accepted, adjusted and accommodated versus those of us who have not is a simple one: They have been accepted, and their pain and disabilities have been incorporated not only into their lives, but the lives of those around them. They are believed.

What do those of us who do not have that kind of outside affirmation do? We need to find a way to self-solace, whether it’s by therapy, a support group or meditation. It may seem simplistic, but we are our own best healers. By self-healing we can throw off the hurt and disbelief heaped upon us by others and instead nurture ourselves.

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 Patient’s Death Was ‘State-Sanctioned Torture’

By Richard “Red” Lawhern, Guest Columnist

Dawn Anderson was 53 years old and a former registered nurse. Her family has granted permission to share the story of her last days. Dawn’s story is both horrifying and highly representative of many people in pain. These are patients who – in effect, if not from deliberate intent – have died in entirely avoidable agony because of the CDC’s 2016 opioid prescribing guideline. 

Dawn was diabetic.  She also suffered from kidney disease.  She had lost both legs and one eye, resulting in severe pain for many years, which until recently was managed with opioid pain relievers.  Her pain management physician – Dr. Paul Madison -- is no longer practicing medicine. Madison was recently convicted of healthcare fraud and awaits sentencing for billing insurance companies $3.5 million for services he didn’t deliver. Madison reportedly had “pill mills” in 11 states, from which he dispensed very high volumes of opioids. 

When Dr. Madison was barred from further treating patients, Dawn sought help from multiple pain management doctors in her area.  She found that many were no longer accepting new patients.  Among the few who would see her, none would treat her with opioids at the dose levels that had been effective for her in the past. Several were transitioning their patients to addiction treatment with Suboxone or recommending steroid shots. 

DAWN ANDERSON

Dawn’s most recent pain management doctor refused to prescribe above 90 morphine milligram equivalents (MME) per day, citing the CDC guideline as a de facto maximum allowable dose level.      

Like many patients with chronic pain, Dawn’s medical situation was complex and involved several interacting medical disorders and issues.  She had a history of MRSA – a highly aggressive antibiotic-resistant staph infection.  Dawn had also personally observed many patients in whom spinal injections had led to worsening pain.  She refused both Suboxone and the steroid shots

On March 4, 2019, a family friend spoke with Dawn.  She was very tired and not feeling well. Her husband was calling from work throughout the day.  When she did not answer, he called the police department and asked for a wellness check. When police arrived, they found Dawn had fallen out of her wheelchair and was unconscious on her living room floor. She was transported to a hospital.  When she regained consciousness, she was very confused.

Hospital physicians determined Dawn had a severe urinary tract infection and her kidneys were failing. She was admitted to ICU and a doctor ordered a dialysis tube. Staff also forcibly started her on Thorazine injections, as she was refusing dialysis.  They asserted that she was mentally incompetent.   Family members observed that she was covered in bruises due to the force used when pinning her down to administer the injections.

On March 10th, Dawn was moved from intensive care to a regular hospital room. Her daughter called a family friend so that Dawn could talk to someone she liked and trusted.  The conversation was very difficult.  The friend asked why Dawn was refusing dialysis.  Dawn replied, “I just can't take it anymore.”  She anticipated having new issues with the dialysis, but most important was her unbearable pain.  Hospital staff had again refused to provide adequate treatment with opioid pain relievers.  

Both Dawn and her friend were in tears, but Dawn was adamant: “Honey, I love you, but I can’t suffer any more. The pain is unbearable and I just can’t fight any more. If you keep begging me to, I will hang up.” 

Dawn’s friend and her family had talked with her about entering hospice care, where she would at least be treated for her pain.  She was released from the hospital that day to go home.  Her friend spoke with Dawn an hour later.  She was tired, but had at last been placed on comfort care.

Dawn died a day later, on March 11, 2019. 

What can we learn from this deeply disturbing narrative?  Would Dawn have lived longer if she had been treated adequately with opioid pain relievers?  That is impossible to say with confidence.  But what is clear is that this woman died in needless agony.  Dawn should never have been forced to see a pill mill doctor in the first place. And she should never have been forced to taper from effective dose levels because legitimate doctors were intimidated by CDC and state regulators into refusing effective — and largely safe — opioid therapy. 

By any other name, this was state-sanctioned torture.  

It is not accidental that the American Medical Association recently repudiated the CDC guideline.  But the government dinosaur’s bureaucratic brain is in its tail and it hasn’t gotten the message yet. CDC has merely doubled down on the mythology that doctor over-prescribing caused our “opioid crisis.” They are running away from their own overdose data, which demonstrates the falsity of their assertion.

There is very little relationship between physician prescribing and either opioid addiction or overdose deaths. But the only metric CDC seems willing to use to measure the success of the war against drugs is reduced prescribing to Dawn Anderson and other people in pain.

It is time for this madness to stop!  Opioid prescribing guidelines need to be taken away from the CDC and rewritten from the ground up by more competent agencies or by professional groups within medicine itself.  And this time, multiple patient advocates need to be voting members of the writers’ group.

Richard “Red” Lawhern, PhD, has for over 20 years volunteered as a patient advocate in online pain communities and a subject matter expert on public policy for medical opioids.  Red is co-founder and Director of Research for The Alliance for the Treatment of Intractable 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.