Writing this painstaking article took months of physical (and creative) suffering. During the birth of this piece, I saw six different specialists over the course of nearly twenty appointments, had three MRI scans, enjoyed zero pain-free days, and got nowhere closer to a clear diagnosis.
At this point of my life, not having pain in my overall healthy 30+ body seemed like a distant “pre-Covid-19” memory.
Readers who, like myself, have opened countless doctors’ office doors without success may feel desperate. Indeed, physical pain cannot be divorced from emotional suffering. Mental challenges, for example, ruminating over the question “Am I going to feel like this forever?” are as exhausting as the physical sensation of pain.
Although I cannot make your (or my) pain magically disappear, in this article, I offer a perspective that is scientific, practical, and hopeful. Avoiding pseudoscience and naïve “just think positive” advice, in the first part of this article, I summon medical knowledge and seek guidance from Dr. Alfredas Vaitkus, the head of the Pain Medicine Center at Vilnius University Hospital’s Santaros Klinikos. In the second part, I turn to my own experience and deploy emotional intelligence to help the hurting reader.
What is pain and how do we experience it?
Throbbing, burning, stabbing, cramping, shooting, exhausting, excruciating, sickening, sharp, tender, mild, agonizing: pain is the common denominator of the human experience.
Everyone has experienced at least some pain in their lives, but few of us have actually wondered what pain is or how we sense it. To help us understand our shared misery, we must look at what we know about pain and how it works in the human body.
Folk wisdom recognizes three levels of pain: pain, excruciating pain, and stepping on a Lego. In academia, however, pain is classified into many types such as acute, chronic, inflammatory, radicular, nociceptive, neuropathic or nociplastic. To tackle the mechanisms of pain, we need to know the latter three categories: 1) nociceptive, 2) neuropathic, and 3) nociplastic, or “other,” pain (the mystical protagonist of my story).
Health professionals are best equipped to deal with the first type, nociceptive pain, the pain that arises from tissue damage. Think of a burn in the kitchen environment, a broken arm, a sports injury, arthritis, and so on. Nociceptive pain is the most common type of pain humans experience.
The second well-recognized category of pain, neuropathic pain, stems from damage or disease affecting the nervous system and is (fortunately) less common. Nociceptive and neuropathic pain can, of course, overlap. For example, a sports injury may result in muscle, tendon, and nerve damage. There are also various medical conditions that can affect the nervous system. Examples include multiple sclerosis, diabetes, amputation (which can lead to phantom limb syndrome), and thyroid disorders. More importantly and sadly, neuropathic pain is less responsive to painkillers and more likely to lead to chronic pain.
To make things more complicated, some pain does not fall into either of these two categories. The uncanny category of “other” has many scientific names such as nociplastic, or functional, pain. The truth is, naming it simply “unexplained” would be equally useful.
Dr. Alfredas Vaitkus explains that “things that are difficult to understand are always shrouded in legend and acquire all sorts of names.” Some pain syndromes have no clear explanation. Consequently, they have been labelled “idiopathic pain,” “atypical pain,” or “functional pain,” and patients have been described as “sensitive” or even diagnosed with a mental illness. “In 2017, the International Association for the Study of Pain defined a variety of pain syndromes that were not associated with any obvious damage to body tissues. These pain syndromes were classified as nociplastic pain. Such pain is thought to be caused by altered nervous system function. Unfortunately, naming it “nociplastic” is an attempt to adopt a unified terminology, but it does not add clarity to the origin or treatment,” Vaitkus says.
“Some of us grew up believing that withstanding pain, that is, not asking for help or not trying to alleviate pain is somehow a sign of inner strength”
A classic example of a nociplastic pain disorder is fibromyalgia. According to Vaitkus, “fibromyalgia and some other chronic pain syndromes remain in a grey area in pain medicine.” Recognized as a disability, fibromyalgia does not have a well-defined cause. Sadly, when patients with unexplained, widespread chronic pain are diagnosed with fibromyalgia, they may be prescribed antidepressants and dismissed.
According to pain science, feeling pain is 100% dependent on the brain
At school, we typically learn that physical pain is an important defense mechanism for our survival. We are taught that pain is protective. It alerts us to potential or actual damage to our body and quickly activates withdrawal mechanisms to prevent injury.
Moreover, some of us grew up believing that withstanding pain, that is, not asking for help or not trying to alleviate pain is somehow a sign of inner strength. This belief, however, has its disadvantages. Untreated or inappropriately treated acute pain can progress to (surprise, surprise!) chronic pain. Therefore, it is in your interest to relieve pain right away. That does not necessarily mean popping a few codeine tablets but rather helping yourself in whatever way feels comforting, such as applying cold, heat, or medicated lotion, using massage, resting, or stretching.
Remember, pain can lose its protective value. Chronic pain is a perfect example of senseless pain (no pun intended). “Chronic pain is defined as pain lasting more than three months,” says Vaitkus. “This definition, however, works best for a typical scenario in which the cause of acute pain was identified and the disease that caused the pain was treated, but the pain did not cease and became no less of a nuisance than the disease itself.” But neither the three-month limit nor the elimination of the initial “cause” of the pain are what matter most. According to modern pain science, whether the pain is acute or chronic, or whatever you call it, the most important question is how much it bothers the patient. “If the pain interferes with a person’s life, then it needs to be treated,” Vaitkus says.
Your brain (mis)interprets: the causes and consequences are not necessarily proportionate
Even if there is a knife stuck in your palm, pain is brain made. No, pain does not come from the affected tissues of your body. It is the brain that projects the pain into the area. Contrary to popular belief, there are no “pain” nerves. Nerves only detect some sort of stimulus. It is our mindboggling brain that interprets the stimuli – it ignores or responds to them by creating the experience of pain.
Moreover, our brain sends signals back that affect the sensitivity and behavior of nerves. This two-way dialogue explains why in some life-threatening situations we may not feel pain, whereas a perfectly safe stimulus can feel agonizing. To our dismay, neurons in our brain can get very “good at pain.” In other words, they may need increasingly less influence to produce pain.
“The causes and consequences are not necessarily proportionate. After all, it is not surprising when the remaining ashes from a campfire cause a wildfire”
In short, the relationship between pain and protection can get distorted, for example, when a body is sensitized to otherwise non-painful stimuli such as touch or when pain persists after an injury has healed. Vaitkus explains, “The causes and consequences are not necessarily proportionate. After all, it is not surprising when the remaining ashes from a campfire cause a wildfire. Body injuries leave a trace. After wounds have healed, at best, scars remain.”
During my journey through pain and “pain education,” I came to the realization that pain may no longer have anything to do with tissue damage and can be worse than its initial cause. Vaitkus agrees. “People are surprised by this, but it is not strange. ‘Distorted’ reactions or consequences are caused by the reaction of or damage to the nervous system. These are called neuroplastic changes,” he says. Sadly, we know little about why these changes occur.
“The prevalence of chronic pain in European countries ranges from 12 to 30 percent of the adult population. In some parts of the world, this figure can be as high as 50 percent. In Lithuania, it is about 21 percent,” Vaitkus says.
What you can do if your loved one is in pain
It is important to understand that pain may be uninformative and disproportional to the danger posed to the body. Nevertheless, life rarely exists in the extremes of black and white. Just because a medical professional cannot put her finger on it, it does not mean there are no objective reasons for your pain. Complex illnesses may take years to diagnose. And even if tissue damage is not a problem and the only thing that is “broken” is your “pain meter,” it does not mean that you can simply think the pain away.
If you have someone in your life with chronic pain, you should take at least one message from this article. Phrases such as “don’t stress out,” “be more positive,” or “you are (going to be) fine” are useless, if not naive. The Canadian writer Jodi Ettenberg has said, “It’s as if people expected us to will it away. If only we had thought about being more positive! How silly of us.”
While psychological state is an important modulator of physical pain, “being positive” or “not stressing out” is vague and impractical advice for someone in pain and potentially very stressed or depressed. During my own journey through chronic pain, I found (or received from others) little concrete information on how exactly I should stop feeling stress and reduce my pain.
Misunderstanding or being dismissive towards people with chronic pain relates to the fact that for most people, pain is temporary. Strategies such as resting, working out, or spending quality time doing things you love are excellent strategies for coping with temporary pain. When dealing with chronic pain, the same strategies may be insufficient, ineffective, or worse, seem intimidating and cause anxiety (e.g., pain disrupts sleep or can keep a person from exercising). Put simply, if your loved one is hurting, the best you can do is acknowledge their pain and ask, “How can I help?”
Are you in pain? Tip No. 1: Focus on your self-esteem
Vaitkus encourages suffering readers to seek help from a certified pain medicine expert and remain hopeful. “Most people get along well with chronic pain – adapting themselves, their environment and activities, and changing attitudes.” I can only concur, and as a non-expert, focus on changing the attitudes towards pain.
On grim days, when even simple tasks seemed too physically demanding, I cried and begged whoever had my voodoo doll to give it a rest. I arduously searched for medical answers only to conclude with a practical tip No. 1: whether you know and especially when you do not know the cause of your pain, it is a good idea to focus not on the (probable) cause but on what boosts your confidence. Patients with chronic pain often lack self-esteem, not only regarding their physical abilities, but overall. I know, it is easier said than done, especially given the ongoing Covid-19 pandemic, but ask yourself what makes you feel stronger and more confident and cling to it like your life depends on it. The science writer Paul Ingraham has rightfully said, “A confident and happy brain amplifies danger signals less than an anxious, miserable brain.”
Tip No. 2: stop setting yourself up for failure
I treat my pain (the meaning of “treat” here is “behave towards” rather than “try to cure”) as a loss. Dealing with chronic pain is somewhat like going through a break-up. After losing somebody you love, you might feel that love as such has been taken away from you. Forever. This deep feeling of deprivation consequently creates the fear of never feeling whole again. Chasing the past, or in the case of pain, waiting for the old healthy self to come back, sets you up for failure.
Moreover, a common mistake that too many of us make when hurting is curling into the fear of more pain. In my life, instead of accepting things how they are, I tended to retreat into myself, warding off anything (or anyone) that I (often falsely) believed could make me hurt more. Although worrying about whether you can endure more pain is a legitimate concern, anticipatory anxiety will paralyze you.
Tip No. 3: Relinquish control
My third tip is to accept that things may be sh*t. I am not getting my “old self” back. In fact, none of us can just go “back” or skip forward into a perfect future. Nevertheless, hopefully, we can find a place of comfort under our own imperfect skin.
This idea of accepting the “bad” contrasts with popular psychology that promotes positivity and chasing happiness. Here I would like to cite Mark Manson, the author of the New York Times bestselling book The Subtle Art of Not Giving a F*ck. While Manson focuses on the question of pursuing happiness rather than fighting off physical pain, his thoughts are on point and deeply relevant:
The goal is to take your mind – a wonderful thing that has spent its life learning to chase various creatures – and teach it to stop chasing its own tail. To stop chasing meaning and freedom and happiness because those only serve to move it further away from itself. <…> And how do we do this? By giving up. By surrendering. Not out of weakness. But out of a respect that the world is beyond our grasp. By recognizing that we are fragile and limited and but temporary specks in the infinite reaches of time. You do it by relinquishing control, not because you feel powerless, but because you are powerful. Because you decide to let go of things that are beyond your control.
And lastly, remember that what makes pain so weird, hard to manage, and divorced from any clear causes is its quality of being brain made. The very same quality means that there is still a chance for it to cease.
Elena Lazutkaitė is a doctor in Critical Theory and Cultural Studies at The University of Nottingham.