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Dr. Death — IE, What Happens When Your Spine Surgeon has a God Complex

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“I can fix you.”

No doctor worth their degree says, “I can fix you.” It is a promise that no one can keep. The beginning of “Dr. Death,” a relatively new podcast from Wondery, speaks to that resigned place in the soul of someone weary with suffering, and this doctor said the words all pain patients are so desperate to hear.

“Imagine. You’re struggling with back pain for months. No one can tell you what’s wrong. Then, you find a doctor, and the words that he said that I wanted to hear were, ‘I can fix you.’ Those are magic words. I was in pain.” — via Wondery

My gorge rose while listening to the vivid details of a patient’s head literally being separated from his cervical spine by this surgeon’s sheer ineptitude. Another patient’s esophagus was cut and a sponge left inside to fester. Yet another’s vocal cords were destroyed, rendering her voice a strangled, raspy whisper. Nerve roots severed. Bone fragments digging into muscle and even the spinal canal. All of them suffering from back pain, neck pain, all just desperate for relief. These are thirty-three victims of a neurosurgeon who was seemingly intent on not just killing his patients, but ruining his patients, oblivious to the destruction left in his wake.

Listening to this podcast as a regular person would be horrifying. Laura Beil’s reporting is solid, her calm voice weaving narration in the detached way this story needs; too much emotion, and I would be overwhelmed and forced to skip ahead, like I recently did with the first episode of “Happy Face” (listen at your own risk, because the Happy Face Serial Killer did not like cats).

These days, it’s imperative for reporters to be open-minded and even-handed. You can sense Laura’s righteous anger at Christopher Duntsch, the disgraced neurosurgeon with stellar credentials who claimed he was the best in Dallas (spoiler: he’s not). You can tell Laura wants to do everything she can to expose a medical system more intent on protecting itself than its patients. The problem is so much larger than one sociopathic, cocaine-riddled surgeon. The problem is that the system allowed him to exist and to continue harming patients despite his obvious incompetence. The system even seemed to encourage it.

As a back pain sufferer, the podcast hits home. As a former journalist, I admired the hours and hours of work and the level of detail. As an attorney, it enraged me. Duntsch was allowed to go from hospital to hospital because A) no law exists for what he was doing (How, exactly, does one sue a surgeon for being terrible at surgery? Answer: You get creative) and B) other physicians feared potential lawsuits. If they reported him and his shockingly awful surgical skills, Duntsch could retaliate and sue them in response. “They’re infringing on my livelihood with these defamatory claims!” he could claim. “I can’t make several hundred thousands of dollars per year if you carry on like this!”

Hey, but what about your patient’s spine? Remember that?

Duntsch’s record remained clear for years despite a national database existing for this very reason. Mentors kept their mouths shut. Supervisors swept problem surgeries under the rug. Patients — even Duntsch’s best friend, who willingly went under the knife — were left utterly devastated.

How does someone get that far in life and not recognize their own limitations? How does someone get the degrees, the accolades, and somehow fake his way to holding a scalpel in an operating room? How does he potentially ruin my spine?

We put so much faith in our doctors. We trust, knowing they are educated and have dealt with similar problems in the past. I allowed another human being to cut into my body, to reach into the part of me controlling all of my limbs, and fix what he found. Twice. I trusted that he knew what he was doing when fiddling with the Jenga tower that is my spine and that he had been vetted by a qualified panel of experts.

Christopher Duntsch took advantage of that trust. Laura Beil recounted a story about how Duntsch just could not accept he wasn’t a good linebacker during high school. He couldn’t nail drills during football practice. He would try again and again, haranguing the coach to watch his movements, enlisting teammates to help, dragging the drill out for weeks beyond anyone else. When the drill came up again in practice later in the season, he’d still be unable to do it. But he would not accept defeat.

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JUST GIVE UP ALREADY, CHRIS. [Wikimedia Commons]

When does refusal to accept defeat become madness?

He was like this with wrestling, too, because of course he was. He was all about sweat equity, thinking that if he worked hard enough, he’d somehow succeed. Plenty of people are told this as children, but I’m not sure our parents meant it literally. Duntsch actually hung up on a friend mid-conversation, drove over to his house, knocked on the door, and challenged him to a match in the front yard when the friend said, “Dude, you’re really bad at wrestling.” And wouldn’t you know it, he was bad at wrestling! Duntsch was pinned easily and insisted on remaining there at his friend’s house, assessing his mistakes, calling for rematches, and continuing to fail. But he would not accept it.

God complexes like these are astounding to me. He couldn’t accept that he was bad at football; he wanted to do it, so he did it anyway. He was bad at wrestling; he did it anyway. He was bad at surgery; he did it anyway.

How did the system actually allow him to do this? To fake his way into an operating room? To destroy people’s lives and leave them with no recourse?

As ProPublica’s coverage on Dr. Death noted:

Multiple layers of safeguards are supposed to protect patients from doctors who are incompetent or dangerous, or to provide them with redress if they are harmed. Duntsch illustrates how easily these defenses can fail, even in egregious cases.

Neurosurgeons are worth millions in revenue for hospitals, so Duntsch was able to get operating privileges at a string of Dallas-area institutions. Once his ineptitude became clear, most chose to spare themselves the hassle and legal exposure of firing him outright and instead let him resign, reputation intact.

He worked at Baylor Regional Medical Center. University Hospital. Baylor Plano. Dallas Medical Center. The Minimally Invasive Spine Institute. Look at this extraordinary paragraph from D Magazine’s piece on Christopher Duntsch:

His CV proclaims that he earned a doctorate in microbiology from the prestigious St. Jude Children’s Research Hospital, graduating summa cum laude. St. Jude says there was no such program at the hospital at that time. (He also appears in no yearbooks from the University of Tennessee Health Science Center at the time in which he says he earned his Ph.D., and the school declined to verify his claims, citing a federal privacy law.)

It didn’t matter who Duntsch took down with him, either. He rendered his best friend — his best friend — a quadriplegic when all Jerry Summers wanted was to be relieved of his neck pain. And folks, this doesn’t even address Duntsch’s alleged cocaine use and drinking before surgeries. Or the email he wrote to his secretary/lover: “You, my child, are the only one between me and the other side. … I am ready to leave the love and kindness and goodness and patience that I mix with everything else that I am and become a cold blooded killer.”

I can see why this case is so novel, legally-speaking. If doctors are prosecuted in a courtroom for conduct in an operating room, what’s to stop the law from coming down on anyone who assisted him in those thirty-three terrible surgeries? The nurses, who were yelled into submission when they questioned his authority? The radiologist, who could see the incorrectly-placed bolts and screws, but also quelled under Duntsch’s anger? As lawyers like to say, it’s a slippery slope. If this doctor is prosecuted, then who else will be?

Well, an operating room is hardly a criminal conspiracy. Everyone likes to think they’d stand up for what is right if they were in that nurse’s shoes. They’d stop the operation. They’d tackle Duntsch and grab the scalpel from him. Then they’d lose their job, at the very least. It would only get worse from there.

It’s a bad situation for everyone, but what everyone seems to forget is that the situation is worst for the patient. We’re the ones who are ruined and left with no recourse. In Texas, where all of these crimes occurred, tort reform in 2003 ensured that pain and suffering damages are capped at $250,000. Attorneys hardly even entertain taking medical malpractice cases for this very reason. In another state, Duntsch’s actions might have spurred swifter repercussions. The damage might have been contained. Not only are there no laws on the books for what Duntsch was doing, but patients are left with no avenue for compensation. Duntsch had to be indicted on elder abuse and five counts of assault because no lawmakers had ever envisioned this scenario.

Duntsch was convicted and is in prison for the rest of his life. Great. That’s dandy. Now we must make sure that other patients are protected, that laws are put on the books for this type of nightmare scenario. This must never, ever happen again.

Boston Herald, Quell 2.0, Pain Awareness Month (and Some Thoughts)

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Hey kids! It’s been a while. Things have been busy with a new part-time job, so my attention has been diverted. Much has been happening. September came and went without me even mentioning Pain Awareness Month. Good job, me. My only contribution was being quoted in this Boston Herald piece about the Quell’s newly-released version 2.0. I think it explains wearables in a good way and how they can be added to a patient’s self-care toolbox. It won’t end the opioid epidemic, but it might help.

Read the Boston Herald article here.

Chronic pain patients are (rightly) suspicious of anything available over the counter. It always seems like someone is trying to take advantage of our suffering and pull a fast one on us.

Considering Stephen Colbert’s recent pointed slap to the Sackler family, there is a basis to this collective suspicion. For those unfamiliar, the Sacklers own pretty much all opioids in the universe (OxyContin, most importantly, a drug for which they pushed a hellishly inaccurate marketing campaign), and they also manufacture generics of their own products. Now they are taking over the very medications used to wean patients off the opioids they produce, ensuring a firm grip on every aspect of the market.

When everyone seems like they’re taking advantage of you and your pain, it’s very hard to trust. That is why I have always wanted to discover things for myself. (To be clear, I have never been paid by NeuroMetrix, the makers of the Quell device. I received a Quell 2.0 to test in exchange for a blog post about my experience with it. We’ll get to those thoughts in a minute.)

That inherent collective suspicion was actually why I became a columnist for the Pain News Network. Companies take advantage of desperate patients, and I wanted to find out, for myself, what works and what is BS. The Quell works. For me, at least.

It does not work for everyone; right now it’s averaging four out of five patients who show improvement. There is no miracle cure, not when there are so many different types of pain. That’s why the Quell is used in conjunction with other modalities: physical therapy, medications, exercise, diet, etc. I use mine along with all of those things.

If we’re talking pain scales here, the Quell allows me to get from an 8 to a 5. On great days, it’s an 8 to a 4. That might seem like nothing to write home about, but anyone with chronic pain understands how crucial even a bit of relief can be. It could mean the difference between staying in bed all day and getting up. It could mean shopping for groceries after work when otherwise you’d have to go home, hungry, and collapse. It gives you more relief, even if it’s not a panacea.

Nobody likes being told they have to take action to treat their pain. This pain was done to us. Why should we be responsible for fixing it? I didn’t ask to get rear-ended by two cars. I didn’t ask to break my spine or have two neck fusions. For many years, I expected my pain management specialist to fix my pain, to make it go away. These doctors, talented as they might be, can only manage. They cannot fix. They cannot cure. That means if you want something to be different, you have to do it yourself.

Hence why I try so many medical devices. Now, my thoughts on Quell 2.0.

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I was excited, okay? Also, I can’t open mail without destroying it.

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Here we go. As you can see from my stellar photography skills, the new version is much smaller. The band that wraps around your calf is the same size, but the unit feels less bulky. I can even do most yoga poses with it on, whereas before the device would disconnect from the electrode if I flexed my calf too much. Progress!

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Another change is that there is no power button on the device itself. You manage it solely with the app, which takes some getting used to. I’m familiar with slapping the Quell on and pressing a button before going about my day. Now I slap it on and have to remember to power the app if my phone isn’t in the immediate vicinity. I’ve forgotten to turn it on more than once, which is my own fault. Turning it off can now be achieved by tapping the unit twice.

The accompanying literature says this version is more powerful than 1.0, though it does not feel different. It’s not like there are more shocks (which is probably a good thing). The sensation is pretty much the same. I forget it’s on unless it’s at the beginning or end of a treatment cycle when the tingling is more powerful.

I have to determine efficacy based on what I accomplish on a physical basis. This is because my pain is diffuse and ever constant. No matter what I do, it’s always there. That’s why I examine my activity to see if I’m showing improvement. With the new device, I went on our annual trip to Milwaukee and kept up with friends. I went to bars and festivals and restaurants and sat in cars and sat at uncomfortable tables. I didn’t need three days to recover upon returning home; I was up and about the day after our flight. Normally I’d require much more rest. I think I can chalk that up to version 2.0, considering I haven’t changed anything else. (The only other change to my routine is that I received diagnostic thoracic outlet syndrome injections, but that’s a story for another day, and they certainly didn’t make me feel better. My arms burned and throbbed for two weeks afterward.)

Now, the most important test:

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Welcome to my legs.

GUYS. GUYS, I CAN WEAR VERSION 2.0 UNDER LEGGINGS.

It’s definitely not as noticeable as the previous version (when standing face-on, anyway).

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I must now never turn sideways!

Most people don’t seem to notice it (or if they do, they kindly do not remark on the square-shaped lump under my pant leg). I have discovered a valuable lesson as I age: Most individuals don’t think about your appearance for more than a few moments, a fact upon which I heavily rely. Those zits you’re so uncomfortable about? The daring peplum coat that might be out of style? Maybe a fleeting glance, a quick thought. Nobody cares. Maybe in my teenage years, I would’ve been self-conscious, but these days — at the ancient age of 31 — I couldn’t care less.

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It’s all about the ILLUSION. Also, Allbirds shoes? Most comfortable in the world. Get on that, folks. (For God’s sake, they’re machine washable!)

So Quell 2.0! I like it. I know I’m their go-to girl for talking points because I won’t shut up if I think there’s a chance it can help someone. I’ll tell you what I tell everyone else: NeuroMetrix offers a 60-day money-back trial period. That’s two months to see if it works for you. I knew within 15 minutes that it worked for me. No, I have not been paid for this endorsement. I just like things that work. 

What have you got to lose by trying?

Contributor: Conquering The Pain Of Rotator Cuff Injuries

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Rotator cuff injuries (RCIs) are one of the most common causes of shoulder pain for people of all ages. They occur when damage is done to the group of muscles and tissues that surround the shoulder joint and are most prevalent in groups of people who perform frequent overhead motions. Examples include carpenters, painters, and baseball and tennis players. However, injury can also occur because of age. When the tendons are worn down, they can even tear. If you notice sudden pain or you have been battling pain for a while, take a proactive stance to injury and find the best combination of treatments so you can get back to normal life as soon as possible.

Rotator cuff injuries can cause chronic pain

The pain from an RCI can be acute or chronic. When the injury is caused by a sudden blow or brusque movement, acute pain can ensue but when damage is caused by wear and tear (which occurs in jobs that require frequent lifting, for instance), pain can be chronic. Symptoms that indicate injury or worn-out tendons include a dull ache in the deep shoulder, pain when lifting the arm, weakness, and difficulty sleeping, particularly if you lie on the injured shoulder. Regardless of the cause of your pain, it is vital to seek medical attention quickly, since failing to do so can make the problem worse.

What treatments exist for chronic pain caused by RCIs?

The goal of treatment for RCIs is to quell pain and improve movement. When a tear produces chronic pain, the usual approach is to try physical therapy, corticosteroid injections (for short-term relief), and anti-inflammatory oral medication. When pain persists, surgery is sometimes recommended. The emotional impact of injury should also be taken into account. In a study published in the journal BMC Musculoskeletal Disorders, C Minns Lowe et al note that doctors need to understand the intensity and shocking nature of the pain that can be experienced: “Clinicians need to be aware of the potential emotional impact caused by cuff tears and to ensure that patients needing help for conditions such as depression are speedily identified and provided with support, explanation and appropriate treatment.” RCIs can happen to anyone, but when they occur to people who depend on movement to make a living, their impact can be much stronger.

Can surgery help you?

Surgery should be strongly considered when chronic or intense pain is present, or when weakness follows a shoulder injury. If this is your case, your doctor will normally take an MRI to determine if you have enough remaining tissue for repair. There are many types of surgery for RCIs, including arthroscopic tendon repair, in which a small camera is inserted and tools are used to reattach the torn tendon to the bone. In severe cases, shoulder replacement surgery may be recommended. Surgery can be successful if patients assiduously follow the rehabilitation program prescribed by the surgeon.

What if you are not a good candidate for surgery?

If you have arthritis, obesity, diabetes, or other conditions, your doctor may advise against surgery. If so, they will most probably recommend gentle stretching, strengthening, and physical therapy. Alternative therapies to be considered include acupuncture, transcutaneous electrical nerve stimulation (a TENS unit), and an anti-inflammatory diet. To play on the healthy side, adopt a Mediterranean-style diet and avoid sugary and refined foods (which promote inflammation). CBD oil has also been reported by some patients to relieve shoulder pain.

“The rotator cuff is the most unique and complex joint of the body, hands down. It has the most motion of any joint in the body, and it relies on every aspect,” says David Glaser, MD, Chief of Shoulder and Elbow Service at the Penn Musculoskeletal Center. It can be injured through sport, but also through repetitive motions and even normal aging. If you have pain or weakness in your arm, see your doctor immediately to embark on a treatment plan that will help keep pain to a minimum.

Jenny Holt is a freelance writer and mother of two. She loves nothing more than getting away from it all and taking her pet Labrador Bruce for long walks, something she can do a lot more now she’s left the corporate world behind.

CBD Oil for Pain Relief: Legal Status, Side Effects, Drug Tests, Traveling, and More

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***APRIL 2019 update: I work as an associate attorney with a civil litigation firm in Cambridge. My boss is always interested in developing new practice areas, so we attended a Cannabis Law continuing education conference. Naturally, it was filled with Millennials… and my boss, who’s meow meow years old.

Because of his relentless questioning, Dan (my boss) got the presenters to admit that while industrial hemp is now legal per the federal government’s 2018 Farm Bill, hemp-derived CBD products are not. They are under the purview of the Food and Drug Administration because it is a product actually ingested by human beings.

The Brookings Institute explains it best:

 CBD generally remains a Schedule I substance under federal law. The Farm Bill—and an unrelated, recent action by the Department of Justice—creates exceptions to this Schedule I status in certain situations. The Farm Bill ensures that any cannabinoid—a set of chemical compounds found in the cannabis plant—that is derived from hemp will be legal, if and only if that hemp is produced in a manner consistent with the Farm Bill, associated federal regulations, association state regulations, and by a licensed grower. All other cannabinoids, produced in any other setting, remain a Schedule I substance under federal law and are thus illegal. (The one exception is pharmaceutical-grade CBD products that have been approved by FDA, which currently includes one drug: GW Pharmaceutical’s Epidiolex.)

So all of those CBD products at your local minimart promising to do everything from relieving headaches to curing your lupus? Technically illegal. However, the federal government doesn’t seem to be doing much enforcement (though New York has started issuing fines up to $650 to restaurants offering CBD-infused products and Ohio banned them outside of registered medical dispensaries).

My point being? This column is not legal advice. This trip happened before the 2018 Farm Bill and also involve foreign countries with nebulous laws surrounding CBD. I got specific permission from authorities in the Dominican Republic and was prepared for my CBD cartridges to be confiscated anyway. Don’t do anything stupid and always ask permission rather than seek forgiveness in these scenarios.***

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I recently took a trip to the Dominican Republic. It was a 30th birthday bash for a friend at an all-inclusive resort, possibly one of the greatest vacations I’ve ever experienced. Rather than actually be excited for the trip, however, I spent months fighting crushing anxiety. I hadn’t traveled internationally in years, since before my first car accident. I figured I could handle this because we wouldn’t be doing much besides sitting on the beach or by a pool. Despite this knowledge, I was frightened. What on earth could I do to handle what I knew would be increased pain, much less participate in fun activities with 15 friends?

I wanted to go, and I was determined to go. I knew there would be few chances to travel with my friends like this again, and if I didn’t go, I’d regret it on my death bed.

How can anyone not want to go here?

Me taking a photo of Husband taking a photo of the ocean.

So, how could I enjoy this trip? 

My husband is a fan of Instagram. (Stay with me, this is relevant.) He follows many pro athletes’ pages, and thus he stumbled across ads for Pure Kana and Chakra Xtracts. They make CBD oil out of hemp rather than cannabis, resulting in a legal product that can be brought across state lines. For those who are unfamiliar, CBD oil is a pain-relieving supplement created from either cannabis or hemp that has no psychoactive tendencies. This is a very important either/or situation. You won’t get high using CBD oil. Many athletes use it as part of their recovery regimens. If made from hemp, it does not show up on drug tests. (Caveat: Pure Kana’s oils have less than 0.3% THC, so they can’t 100% guarantee it won’t show up on a drug test. However, the likelihood is low.)

As said on Chakra’s website:

On February 7, 2014, President Obama signed the Farm Bill of 2013 into law. Section 7606 of the act, Legitimacy of Industrial Hemp Research, defines industrial hemp as distinct from marijuana and authorizes institutions of higher education or state departments of agriculture in states that legalized hemp cultivation to regulate and conduct research and pilot programs.

It also has very few side effects. From the Ministry of Hemp:

A study published in 1986 in the International Journal of Neuroscience, examined the effects of CBD oil in 5 patients with dystonic movement disorders (muscle tremors and other forms of uncontrollable movements). CBD oil’s side effects “were mild and included hypotension [low blood pressure], dry mouth, psychomotor slowing [slowed thoughts or movements], lightheadedness, and sedation,” according to the study’s authors, Paul Consroe, Reuven Sandyk and Stuart R. Snider.

I experienced none of those side effects, for the record. I made sure to try both products prior to the trip, and I was pleased to find they muffled my symptoms enough that I could function.

The real question: Can CBD oil made from hemp — a legal product, but uncomfortably close to cannabis-derived CBD oil — be brought to the Dominican Republic, a country notorious for its strict drug laws? 

Hemp-derived CBD is legal. Okay, great. That’s not quite the question. The DR’s official website held no answers about hemp, and message boards made it sound like I’d end up in a Dominican jail for six months if I even thought about bringing anything into the country. The clearest answer we found was that Dominican officials do not differentiate between CBD and THC, the psychoactive ingredient in cannabis. But this was hemp. Ropes and jewelry are made of hemp — surely they wouldn’t object?

As my husband noted, it wasn’t the United States I needed to worry about.

I ended up actually emailing the Punta Cana International Airport because I didn’t want to do anything, you know, illegal. I posed the question to Customer Service, who said they’d check: Am I allowed to bring hemp CBD oil into the Dominican Republic?

They wrote back and asked, “Well, how much?” I said, three vape cartridges and a 1 oz bottle, all made from hemp.

“What’s it for?” Chronic back and neck pain.

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For those of you who don’t have 2,000/20 vision, that says “Thank you for the information provided. Due to the circumstances you have explained below and to make this process as stress-free as possible for you, our airport security have inform[sic] us that you are allowed to travel with your CBD oil in carry-on luggage (not exceeding 100 ml) or checked bag. Please keep in mind that this could be checked by a security inspector once you reach our security point.”

Excellent. I printed out the appropriate literature showing how these products were made and what was in them, should security decide to question me. My pain management doctor prescribed a few rescue medications for the trip, knowing it would be difficult to travel. Airplanes make my pain worse (changing pressure is always fun), though the return trip proved to be much harder than the trip out there. A week after our flight, I am still recovering.

Either way, I needed a plan in place for the possibility of Customs confiscating my vape cartridges and tincture at the border, leaving me without additional relief for my week in the country. Pills and the Quell can only do so much, and I knew that extra oomph was necessary if I wanted to transition from “pain-riddled lump” to “person sitting happily by the pool.”

I want to yell at everyone on those message boards for terrifying me prior to the trip, because Customs was a breeze. They’d made it sound like a parade of drug-sniffing dogs was going to launch at us the moment we disembarked. Instead, we filled out our forms,  spoke briefly with an agent, and then we were welcomed into the country. Bam.

To be clear, I didn’t hide anything. It was above-board. It was all in my carry-on, in a clear plastic bag for their perusal. It went through security. The literature was right there with it, stating its ingredients and what it was used for. Literally nobody cared.

The best part? The trip was an absolute blast, and despite the intense humidity and heat, I felt relatively good. I even participated in most activities. I now have much more hope for future traveling plans, because I went to a foreign country and managed to have a great time. The pain was certainly there, and a low-grade migraine thudded along in beat with every thought. Being at an all-inclusive resort, however, definitely took out the sting.

Like, my God. Look at this place.

Swim-up rooms! SWIM-UP ROOMS! [TRS Turquesa Hotel]

The vapes and tincture were lifesavers. There is literally no question, and I cannot adequately express my gratitude. While I feel that hemp CBD as a whole is not as strong as others on the market, I noticed a significant difference before and after I took them. The tincture was 1,000 mg of CBD, and the vapes were 200 mg. While the vapes were not as potent, I think the very action of vaping allows the oil to hit where it’s needed: my head. Those helped my headaches considerably. The battery for the vapes died after a couple days, but the company sent me a replacement as an apology (and a free cartridge!). They were the size of pens when connected to the battery, so they were very discreet and easy to bring with me. The battery is charged via USB, so again — simple.

The sublingual tincture from Pure Kana tasted like mint and relieved a portion of my pain within minutes. The vapes from Chakra Xtracts ranged in tasty flavors and didn’t leave any lingering odor. I am absolutely adding them to my normal medication regimen and will use them again when I travel.

The world feels larger to me now. I can go places. I can do things. Having that possibility available means more than I could ever say.

Guest Contributor: The Pain Companion by Sarah Anne Shockley

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As many of you know, I write an occasional column for the Pain News Network. One of my compatriots there, Sarah Anne Shockley, recently published a book called The Pain Companion: Everyday Wisdom for Living With and Moving Beyond Chronic Pain that everyone who experiences pain or chronic illness should read. She was diagnosed with TOS (thoracic outlet syndrome) in 2007 and has lived with intractable nerve pain ever since.

It’s a very easy read and covers the necessary topics for a chronic pain lifestyle manual, such as anger, acceptance, relationships, self-image, and more. It’s the way Sarah writes that stands out; she is accessible, not only because she’s lived it, but also because she can relate her unique experience to other types of pain and offer constructive guidance. My pain isn’t her pain, but she showed me that we’ve been in the trenches together. This talent always stood out to me in her columns for PNN, and it’s translated very well to book form.

Since Sarah can say it better than I can, here is an excerpt from The Pain Companion about anger, blame, and chronic pain:

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While guilt and shame often stem from a belief in our own failings, anger and blame usually arise when we look outward and try to understand our situation from the standpoint of the people and circumstances that seem to have caused our problems.

When we’re not getting better, when we’re in pain and it is relentless, sooner or later we are going to get angry at someone or something.

We ask, Why me? How did this happen? Who or what is to blame for my misery? We look for the root so we can understand what happened. We think that if we can understand how it all came about, we can somehow undo it.

The trouble with this mindset is that the only way to answer these questions is to find something to blame: the job, the boss, the stresses of life, the other driver, the doctors who didn’t see it coming, air pollution, fatty foods, genetics, a traumatic childhood, our spouse, or anything else we can think of. We imagine that there is one thing, one starting point, one cause. If we can find it, we can heal.

At times, it is useful to pinpoint the onset of pain, such as when knowing exactly how an injury or illness happened can contribute to returning to wellness. But once that is found, it is no longer helpful to continually go over the history of an injury or ailment, the mistakes, or who was responsible for what.

No matter the real cause of your situation, at some point, you are also going to feel angry with yourself for having gotten into this situation, for making the choices that somehow led to this.

You can also build up resentment against yourself for not being able to get out of the fix you are in. It just seems to reflect badly on you as a person.

Of course, most people will say that they don’t think less of you because you are in pain or don’t consider you a bad person for being sick or injured. But you may.

On the inside, you feel awful about having to live in this situation and inflicting it on others. You can’t help it. It wears on you and can create a negative sense of self over time.

You will undoubtedly also feel angry at the pain because it is so insistent and so faceless, a force that can’t be bribed, cajoled, or bargained or reasoned with.

Anger is understandable, and it can be very healthy, but keeping it around because you need someone or something to blame, including yourself, only serves to keep pain in place.

Antidotes to Anger and Blame

Allow Your Anger, Then Use It for Fuel

There is nothing inherently wrong with feeling angry about what happened and what you are currently suffering. In fact, for people stuck in depression and sadness, anger can be a very liberating force.

Anger has a lot of energy in it. Rather than sitting still and feeling powerless, anger wants to move and change things, so it can be a very helpful emotion when harnessed for good. It can move people out of the doldrums and into positive action.

However, once you have gotten in touch with anger, you don’t want to stay in it. It’s not helpful to continuously feel angry and blaming, even if there is something specific to fault. It simply isn’t conducive to healing.

Anger that doesn’t move turns to bitterness. Use its energy to fuel your determination to recover, rather than let it eat away at you. Let it go and you are free to move on.

Leave the Past Where It Is

If it is important to you, spend the time you need to make a clear assessment of how your illness or injury came to be, then leave it alone. If the cause is uncertain or a complete mystery, then make the choice to leave it as a mystery for the time being.

Your energy and attention need to be on healing, not on who did or didn’t do something, or what exact circumstances were at fault. With the only exception being the times you may need to be involved in legal activities or a medical review, or if the cure lies in finding the exact cause, leave the past in the past.

The energy of blame is always looking backward, and you need to marshal your resources in the present so you can heal and have a better future.

Let Go of Resentments

I think of resentment as the quieter cousin of blame. Rather than accusing and pointing the finger, resentment seems to stem from a creeping and pervasive sense of unfairness.

I noticed that I sometimes felt resentful that I was injured through my employment, but my employer was able to carry on with life as usual. I resented his freedom and normalcy, while I had to live with pain and debilitation day in and day out as a result of working for him. I felt it was somehow unfair that he carried on relatively unscathed (except for some financial ramifications).

I resented having a doctor I had never seen before spend about thirty minutes with me and write a report that strongly influenced my disability settlement. I resented the way the workers’ compensation and disability system required me to keep re-proving my injury over and over again instead of actually supporting me to heal.

Keeping these feelings around wasn’t going to get me anywhere positive. I had to learn to notice them when they arose and then decide to just let them go. In the interests of your own well-being, I would recommend letting go of resentments against anyone involved who has hindered your healing or given you bad advice or seems to be unsupportive. You just don’t have the energy to waste on blame and resentment. Instead, use your energy for healing yourself.

Hold Everyone and Everything Blameless

As a second step to releasing resentments, decide to relieve everyone and everything of their burden of blame, including yourself, even if you feel blame is deserved.

This can be challenging because many of our legal and insurance systems can be very adversarial, bent on finding out who is to blame, and we speak of pain, illness, and injury as if they are enemies to be overcome. It is easy to fall into that pattern, but it really isn’t a useful strategy for healing.

The point isn’t whether or not you’re right and justified, which may well be the case. The point is that holding on to anger, blame, and resentment simply isn’t going to get you where you want to go.

# # #

Sarah Anne Shockley is the author of The Pain Companion. In the Fall of 2007, she contracted Thoracic Outlet Syndrome (TOS), which is a collapse of the area between the clavicles and first ribs, and has lived with debilitating nerve pain ever since. She has been a regular columnist for the Pain News Network and is a regular contributor to The Mighty, a 1.5 million–member online community for those living with chronic illness and pain. Visit her online at http://www.ThePainCompanion.com.

Excerpted from the book The Pain Companion. Copyright ©2018 by Sarah Anne Shockley. Printed with permission from New World Library — http://www.newworldlibrary.com.

 

Washington Post: The Other Opioid Crisis

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I just stumbled across a great piece in the Washington Post by a former hospice nurse. We’ve heard this story before (“the opioid crisis is harming pain patients”), but it needs to be told again, louder and louder, in bigger and bigger outlets, until we are heard and understood.

How many more patients will commit suicide before this problem is addressed?

Contributor: How to Maintain a Fulfilling Lifestyle When You Have Chronic Pain

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Approximately 11 percent of the U.S. population suffers from chronic pain, a condition that’s defined when discomfort lasts more than six months. An initial injury or illness morphs into a drawn-out period of physical and mental suffering with symptoms such as decreased appetite, mood swings, fatigue, disrupted sleep, and mobility issues due to pain. It can be difficult to enjoy old activities or keep up with simple, routine-based tasks, but it’s not impossible. By making a few lifestyle changes, chronic pain sufferers can maintain a fulfilling lifestyle without feeling restricted.

Get Help for Regular Tasks

Fatigue and pain can make it difficult to keep up with chores like cooking, cleaning, and pet maintenance. While physical activity should not be avoided, make things easier on yourself from time to time—especially if you’re going through a rough patch. Hire a cleaning service to do a deep clean so home maintenance is easier to manage. Use a grocery or meal-delivery service so you don’t rely on unhealthy food delivery as a source of nourishment. Hire a dog walker and/or pet sitter to make sure your pooch doesn’t act up due to a lack of activity. These pros know how to handle dogs of all shapes, sizes, and breeds. You can even meet caretakers in advance to ensure they’re a good match for your furry friend.

Make Time for Self-Care

Don’t wait for spare time to squeeze in self-care. Make a conscious effort to schedule your favorite activities like you would a doctor appointment. This can be anything from dinner with friends, reading, or meditation—you name it. Engaging in a hobby or activity you enjoy can distract you from pain while helping you focus on something positive. Trying something completely new can boost self-confidence, too.

Eat a Nutritious Diet

Extra weight is only going to tax your joints and cause more pain, so maintain your weight with a well-balanced diet free from processed foods and filled with vegetables, fruits, lean proteins, whole grains, and lots of water. Up the ante by adopting an anti-inflammatory diet that’s void of red meat (a couple times a year is fine), is low on dairy, and has eight to nine servings of vegetables (two servings can be fruit) a day.

Do Exercises Conducive to Your Condition

Exercise can be difficult when you have chronic pain, but it shouldn’t be avoided as it can only worsen your condition. Ease into a routine and definitely don’t push yourself if you’re in severe pain. The best exercises for someone with chronic pain include: stretching to increase range of motion and loosen tight muscles, strength exercises to build lean muscle mass, and light cardio such as walking, cycling, and swimming. Make sure you talk to your doctor before starting any diet or exercise plan as there’s no one-size-fits-all plan.

Use Pain Medication with Caution

The United States is in the middle of an opioid crisis, mainly because drugs are being prescribed to mask problems rather than treat them, thus prompting dependency. This is why some health professionals are recommending an integrative approach (non-pharmacologic) such as stress-reduction therapy and meditation to avoid a potential addiction problem.

Each case of chronic pain is as unique as the individual feeling discomfort, so it’s impossible to say when symptoms will completely cease. Adopting healthy habits and asking for help can make life more manageable. Since emotional and physical pain are connected, make sure you’re managing your stress levels so that you don’t get caught in a vicious cycle.

Kimberly Hayes writes over at PublicHealthAlert.info — go check her out!

New Report: Flipping the Script: Living with Chronic Pain amid the Opioid Crisis

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The folks at Neurometrix just published a new report regarding their survey of 1,500 Americans living with a variety of chronic pain conditions. The results were startling (and hey hey, I’m quoted on pg. 7!):

As the opioid crisis continues to make headlines, the chronic pain community has found themselves in the midst of this chaos – grappling with how to manage their conditions under increased scrutiny.

We wanted to get a better understanding of how the opioid epidemic is impacting this community, so we partnered with Vanson Bourne to survey 1,500 Americans living with a wide range of chronic pain conditions about their feelings around the opioid epidemic, opioid use and their ongoing search for alternative treatments. We’ve compiled the findings in our latest report, “Flipping the Script: Living with Chronic Pain amid the Opioid Crisis.”

Below are just a few of the top findings you’ll see in the report:

  • The unfair stigma as a result of the opioid epidemic: The majority of respondents (84 percent) believe a stigma exists, and as a result, 50 percent indicated they have lied or hidden their opioid use from others.

  • How this stigma is affecting treatment of care: More than a third (34 percent) had to stop taking opioids because their doctor no longer prescribed them, and 42 percent stated the stigma of opioid use has impacted how they communicate with their doctor about their pain.

  • The strong desire for alternatives for chronic pain treatment: The most common reasons for those living with chronic pain to seek other treatments is because they don’t like the side effects of prescription medications (43 percent) and that they prefer to treat pain without prescription medication (39 percent).

  • The fracture in the doctor-patient relationship. Fifty-nine percent of respondents said they don’t believe their doctor is completely informed about treatment options outside of prescription drugs. Only 15 percent said their doctor has proactively suggested looking into alternative treatments.

  • Individuals are taking treatment into their own hands: Ninety percent of those living with chronic pain are actively seeking new treatment methods. When evaluating new treatments, respondents indicated that in addition to their doctor, feedback from friends and family (87 percent), online reviews (80 percent) and news coverage (73 percent) are increasingly influential sources.

  • A “one-size-fits-all” approach to treating chronic pain isn’t working: Those with chronic pain use an average of two treatment methods regularly, and are comfortable trying new treatments, with 59 percent indicating they have tried new methods in the past year.

Check out this website if you want the full report!