About ten years ago, I was afflicted with the worst possible flair of sciatica, for which I eventually needed spinal surgery. I could barely walk, even just to our mailbox. The pain burning down my leg was 10/10. I had tried copious amounts of both ibuprofen and Tylenol, as well as heat, cold, rest, and my physical therapy exercises – all to no avail. I was worried about the trajectory as it kept getting even worse. I couldn’t procure stronger medication for pain because primary care doctors are afraid to prescribe this without an in-person visit. Just try getting into your PCP’s office on short notice these days, for anything! Out of other options, I thought that I could go to the emergency department at my local hospital to get some relief. To protect privacy and avoid embarrassment, we won’t specify this hospital as Mass. General Brigham’s Newton Wellesley Hospital.
With excruciating effort, step by painful step, I slithered from the waiting room, down an endless hospital corridor, and, finally, into the exam room. Beads of sweat were forming on my forehead from the effort. After the obligatory several hours of wait time that goes with any ED visit, a doctor and nurse finally came in. I began explaining my predicament. After about three minutes they cut me off. “You are just looking for opioids. We aren’t going to give you any. You are drug-seeking.” End of visit.
Why is there such a stigma against treating pain? Why can clinicians be so tone-deaf and inhumane? How big a problem is chronic pain in this country? How do we balance it with the risk of addiction? Why are the treatments all so flawed? How can we better address it?
Read on…
Huge Issue
Chronic pain is estimated to affect more than twenty percent of adults in this country -- more than fifty million Americans. It ruins people’s quality of life. It interferes with pleasurable activities, and can lead to depression, anxiety, insomnia, and isolation, even suicide. If you add the costs of lost productivity and medical costs, the bill comes to about six hundred billion dollars per year.
There are many different causes of chronic pain. One might have nerve damage from an injury, a pinched nerve, or a chronic disease (think diabetes). Alternatively, as we get older and portlier, our knees, hips, backs, and spines start to wear out. Cartledge thins, bone rub against bone – osteoarthritis is excruciating. There is cancer-related pain. Other people have less well understood pain syndromes – which get treated with even less sympathy -- such as fibromyalgia or complex regional pain syndrome.
What are our treatments for chronic pain so bad?
The NSAIDs (ibuprofen, naproxen, diclofenac) we usually start with, out of habit, and out of lack of better options, are only modestly effective. They come with a host of dangerous side effects. The number of deaths each year from NSAIDs is in the range of 16,500 people. Some people die from heart attacks and strokes. Others die from bleeding ulcers after suffering from painful gastritis. With each pill, the kidneys are slowly harmed. NSAIDs are an extremely dangerous option for long-standing chronic pain. Just because they are over the counter, doesn’t mean they are safe.
Some people, who can’t take NSAIDs due to allergy, kidney problems, or because they are on a blood thinner, try to get away with acetaminophen (Tylenol). Tylenol is rarely strong enough to help much of anything. We use it mostly because we don’t have better options. One thing it is good for is damaging your liver.
A cornerstone chronic pain treatment in this country has been chronic opioid therapy. Most notoriously, this has involved Oxycontin which was heavily marketed to doctors and patients, as effective and non-addicting, starting in the 1980’s. Oxycontin is neither… The Sackler family, who promoted this nonsense via their company Purdue Pharma, are currently paying billions in damages and are embroiled in lawsuits.
Even if opioids weren’t so dangerous, there is very little, if any, evidence that opioids are effective for chronic pain. Sure, for acute pain they help: if you break a bone or have just had surgery, they are unquestionably effective. For chronic pain, they should only be used when all other treatments have truly failed, such as in someone in extreme pain with a joint that can’t be medically replaced (such as commonly happens if a patient is obese and the surgeon thinks the surgery is too dangerous).
Opioid treatment is associated with a poor quality of life. In addition to the risks of addiction and overdose, one suffers from itchiness, sedation, loss of sex drive, and constipation. Within hours of your last dose, you can start to feel extremely unpleasant withdrawal symptoms. One must always worry about securing a steady stream of opioid prescriptions, which is increasingly difficult. The DEA has been cracking down on doctors who prescribe opioids as a not particularly helpful response to the opioid crisis. This, along with the fact that there is a huge doctor shortage, makes it difficult for patients who are dependent on opioids to maintain a steady supply. When their doctor retires, leaves, or stops prescribing opioids, they can become “opioid orphans” – they withdraw from the opioids and they suffer.
Opioid orphans do not have great options. They can work within the system to find a new primary care doctor – which is almost impossible. Or, they can try to find a pain specialist to take over their opioid prescriptions which, in the current climate of fear and scarcity, is also nearly impossible. Or – they can buy drugs illegally, on the streets, which are dangerously contaminated. Opioids, in most cases, are a disaster from beginning to end, as they sort of chemically enslave the patients without providing either great relief or a good quality of life.
There are other adjunct treatments for pain such as certain antidepressants (e.g., duloxetine/Cymbalta or amitriptyline/nortriptyline), and various anticonvulsants we use (e.g., topiramate/Topamax). There are all modestly beneficial and can help take the edge off of the pain, often if used with other treatments. Like all drugs and medications, they have side effects and downsides as well.
Farthest down the cognitive list that most doctors utilize is medical cannabis, which is often added to the algorithm “when traditional treatments fail.” Personally, I think cannabis should be an option that we include much sooner in our treatment ladder. Cannabis is mildly to modestly effective, has its own side effects, and seems to consistently improve the quality of life for patients. It distracts them from their pain. Cannabis can be used instead of other pain medications, such as opioids – this is harm reduction as cannabis is safer than opioids. Or, it can be used as an adjunct, along with other pain medications.
The mind-body connection
Part of the reason our pain treatments don’t work is that we often just focus on the pure physical aspects of the pain, treating it as a biological problem. We ignore how profoundly interconnected the mind is with the body. According to my addiction textbook, “we believe pain arises in the nervous system but represents a complex and evolving interplay of biological, behavioral, environmental and social factors”. In the end, how a person experiences pain, is what matters.
Patients can feel dismissed when you discuss this, but there is unquestionably an emotional dimension to pain. A chronic pain patient of mine recently lost her twenty-five-year-old daughter to lymphoma. This caused a tremendous worsening of her pain symptoms, which required even more opioid medications than usual to calm it down.
There is a complex and deep interplay between chronic pain and psychiatric conditions. About 40% of adults with chronic pain have clinical symptoms of anxiety and depression. A third meet diagnostic criteria for depression and about a sixth for general anxiety disorder. PTSD is frequently implicated as well.
There is an ongoing feedback loop between physical and emotional pain. They can progressively worsen each other. It is miserable all around when we can’t clearly identify an obvious biological cause of the pain (e.g., in something like fibromyalgia). In this case, patients can feel that doctors think it is “all in their head.” They can feel dismissed and undertreated. In the past, they were labeled as “hysterics” and many of the same stigmas persist.
There is also a big cultural component to the experience of pain. When I was a medical student, and was assisting in births on the maternity ward, some ethnic groups were downright stoical – and didn’t even need much pain control, while others were extremely expressive (i.e., howling in a deafening manner) from the first moments. It is difficult to imagine, with these different reactions, they were physically experiencing the same level of pain.
It becomes much more complicated to treat patients with who have an active or previous history of addiction. Patients are often dismissed as “drug-seeking”, and their pain is ignored. Conversely, the addiction can worsen the perception of pain and can make patients have higher requirements for pain management (which doctors rarely provide). Both the pain itself and the pain pills we give can put stress on their recovery from addiction. If you don’t treat someone’s, pain, especially someone with addiction, that tend to self-treat with more dangerous street drugs.
Ways forward
As clinicians, we need to maintain a delicate balance between “doing no harm” (i.e., not making an addiction worse or giving people side effects from medications) and retaining our basic humanity (i.e., not undertreating someone who is suffering). During a primary care visit, it can be exceedingly difficult to tell if a patient is truly, genuinely in pain or if they are looking for medications to satisfy their addiction (or to sell).
At the end of the day, the last thing one wants to do is to undertreat pain. You make your best educated guess and then wonder, for the rest of the day, if you have made the right decision. You ruminate and feel guilt.
To assist us, the powers that be have developed tests on the physical exam to screen for “drug seeking” patients. There are certain physical maneuvers we can do that, biologically, never truly elicit pain. If the patient grimaces and writhes in pain, it suggests they are magnifying or fabricating their symptoms. (I was truly insulted when a doctor used this on me, during one of my flairs of sciatica. I was like, “you’ve fucking kidding me.”)
The current climate of “opioidphobia” – the intense pressure from the DEA and other sectors to not prescribe many narcotics, doesn’t help doctors with decision making. While intended to prevent addition, it can lead to undertreatment. Some are concerned that as the DEA clamps down on prescribing, the numbers of drug overdoses will continue to climb. This is because people with addiction, or who are in chronic pain, are forced to buy their drugs on the streets when their supply is cut off. Street drugs are likely contaminated and people overdose from fentanyl.
Expectations of what a successful treatment looks like are important. The goal might be “improved quality of life” more than “feeling no pain at all” (which is often impossible). Cognitive filters play a role as the way people experience the pain vastly effects the amount of pain they feel. The more a patient feels as if they have agency in their treatment, and in their situation, the less they will succumb to learned helplessness. The best treatments for chronic pain are often multi-dimensional, with a variety of specialists involved and a variety of different (non-narcotic) meds, the open-minded use of cannabis, injections, ice/heat, physical therapy or acupuncture, mindfulness, and aggressive treatment of any mental health conditions. The goal of all of this is not to entirely obliterate pain – we usually can’t do this - but to allow people to go on with living enjoyable, meaningful lives.
I use kratom and cannabis to control my pain. That being said, kratom and cannabis are only tools. We have to get our body and mind into balance to achieve our goals.
I've been researching opium consumption in the 18th and 19th century by Americans, which can easily be gauged by the amount imported. I don't have the statistics on the amounts presently at hand. But suffice it to say that it was a lot. The notion that there was some mythic time when our pioneer forebears just sucked it up their pain and got on with it is not supported by the facts. That said, I do get the impression that most 19th century opium users understood the necessity to stop their opium use before they got too accustomed to the effects. Paradoxically, the regime of strict prohibition may actually encourage abusive approaches toward drug consumption. It's worth noting that while most pharmacies in the 19th century did make opium available without a prescription, at many pharmacies the buyers were required to sign a "poison register" making note of the fact that the substance they had purchased was hazardous, and possibly lethal if used to excess. Pharmacies were also able to keep track of repeat buyers, and refuse to sell to customers who gave evidence of falling into an abusive pattern of consumption. That sounds like a reasonable and responsible policy to me.