Amy Pohl once led a normal life as a primary school teacher. But the 25-year-old now suffers from a rare chronic pain condition known as complex regional pain syndrome, or CRPS, which has left her bedridden and forced to be fed through a feeding tube.
Pohl was diagnosed with CRPS in January 2018. She first noticed signs of the condition following a brief hospitalization for an infection of the upper airway. A botched IV insertion in her hand during her hospital stay led to an infection. Pohl said she now suffers from constant and “excruciating” pain in her left arm.
“The only way to describe the pain in my arm is like I’m being stabbed by a hundred shards of burning glass,” adding the pain is so severe she once contemplated suicide. In fact, researchers in a 2014 study determined more than 70% of participants with CRPS were considered to be high risk for suicide.
Amy has reportedly lost more than 50 pounds following her diagnosis and is now fed primarily through a feeding tube. “When I eat it feels like being stabbed in the abdomen by a burning knife,” she said. “I’m currently managing about 200 calories a day by mouth and by tube.”
The Suicide Disease
It’s known to attack extremities – an arm, leg, hand, or foot – but CRPS can strike any part of the body, typically developing after an injury like a fracture, or even a stroke or heart attack. In some cases, the condition may develop after surgery, or for no apparent reason at all. This debilitating pain condition affects an estimated 300,000 people in North America each year and is characterized by intense, searing pain along with swelling, changes in skin temperature or colour, and abnormal sweating or hair growth.
The pain associated with CRPS is often described as one of the most severe and debilitating forms of chronic pain, often far out of proportion to the inciting trauma. So intense is the pain that CRPS has earned the moniker of “the suicide disease” because of the prevalence of people committing suicide due to the pain.
The McGill Pain Index (MPI) lends staggering context. The MPI is a tool used to measure the intensity of pain, with scores ranging from 0 to 50, where higher scores indicate more severe pain. It ranks CRPS as the most painful chronic pain condition known to medical science, with a score of 46 out of 50. For comparison, childbirth typically ranks around 36 on the scale, while amputation of a limb registers a 39. With a score approaching 50, CRPS is thrust into horrifying relief.
Although the exact causes of CRPS are not well understood, researchers believe that it may result from a malfunction of the nervous system that causes pain signals to be transmitted abnormally. But the lack of medical consensus regarding diagnostic criteria for the disease, or the failure to agree even on a common definition, ensures that many victims will languish for years in a sea of doubt and confusion.
Perhaps worse than the pain of CRPS is the indignity of being dismissed by clinicians who remain skeptical of the existence of CRPS. The medical field has been guilty of imputing psychological or psychosomatic origins to symptoms wherever there’s a lack of knowledge or understanding of pathophysiological mechanisms. This tendency to dismiss symptoms as psychosomatic can have devastating consequences for patients, particularly those with rare or poorly understood conditions like CRPS.
Distinguishing between psychosomatic and physiological causes of medical pathologies can be challenging due to the overlap between the two and the lack of clear-cut diagnostic tools for psychosomatic conditions. However, when some 300,000 people present with a near identical constellation of symptoms each year in North America, as is the case with CRPS, it cannot be disregarded as a statistical anomaly. And yet, a blithe and casual dismissal of CRPS signs and symptoms continues on. Consequently, patients feel invalidated and misunderstood.
CRPS diagnosis is mainly based on medical history and clinical examination with different tests that can help exclude other diagnoses. When CRPS is caused by a work injury, individuals may face not only a skeptical medical system but also an incredulous workers’ compensation board. In addition to explaining their condition to doctors, a claimant must also convince the workers’ compensation board that a finding of CRPS is not the same as a differential diagnosis. This can be a challenging task however, especially if CRPS is mischaracterized as non-specific, unremarkable, or is mistaken for Reynaud’s, myofascial pain, phantom pain, carpal tunnel, and more.
Pain and suffering
Workers compensation boards rarely award benefits on the basis of subjective pain and suffering alone. This is because pain and suffering are considered subjective experiences that can be difficult to quantify or measure objectively. In addition, pain and suffering can be affected by a variety of factors that aren’t necessarily related to the work injury, such as pre-existing conditions, psychological factors, and lifestyle choices.
Instead, Boards determine entitlements on the basis of permanent clinical impairments that are more demonstrably objective. These impairments are based on medical evidence and can include a reduced range of motion, function, strength, deformation, or other physical abnormalities that can be measured or observed. These impairments are usually the result of the work-related injury and are directly related to the worker’s ability to perform their job.
What this means is that a worker with CRPS will likely have to demonstrate objective clinical impairments that are related to their condition in order to receive compensation. But what’s so often overlooked in the process is the psychological devastation of living in relentless agony. Friends fade into the background, social ties melt away. One by one CRPS dissolves connections and attachments. Many victims will naturally experience profound feelings of frustration, anger, and hopelessness. The depression and anxiety that often follow are indeed compensable as secondary injuries.
Percentage of impairment
Some Boards have begun treating limbs severely affected by CRPS as 100% impaired. A 100% limb impairment is akin to an amputation, as in, a total loss of functional ability. This comes as extremely welcome news for sufferers, but sadly, there continues to be inconsistency from Board to Board, even from case manager to case manager, with respect to the handling of individual CRPS cases.
In cases where CRPS has severely impacted a limb, the affected limb ought to be deemed 100% clinically impaired in most cases. The level of impairment will depend on the individual case and how much the limb’s functionality is reduced due to CRPS. However, it’s important to note that every workers’ compensation system uses a specific definition of clinical impairment, which can be quite narrow and may not necessarily correspond with the subjective experience of the injured worker. It’s important for individuals who are pursuing WCB benefits for CRPS to understand the criteria used to determine clinical impairment and to advocate for themselves to ensure that their condition is accurately represented.
Regional or systemic?
Medical literature shows that CRPS may require a new name, or perhaps, a different acronym that connotes a subtype of CRPS that spreads beyond the affected limb. In these cases of spreading symptoms, the “regional” characteristic of CRPS morphs into a “diffuse” pain syndrome. As with Amy Poh above, the disease migrated from her arm into her digestive system. This spread is thought to occur due to abnormal transmission of pain signals that may cause the brain to interpret sensations from other parts of the body as painful, leading to the spreading of symptoms.
WCB Alberta, as example, has been known to deny correlation between the spread of CRPS symptoms and compensable, localized CRPS. This refusal to acknowledge a causal connection is appealable on robust grounds. Because in fact, the spread is not a new injury, but rather, constitutes a continuation or aggravation of the original compensable injury. In plain language, the spread of secondary systemic CRPS is a consequence of primary regional CRPS. And so, where WCB denies compensation for the spread of CRPS, strongly consider consulting with an experienced WCB representative.
Return-to-work planning for someone with CRPS can be a significant challenge. The symptoms of CRPS can be unpredictable and can fluctuate widely from day to day, making it difficult to plan and manage work schedules. The need for frequent breaks, accommodations for pain management, and avoidance of triggers can make it difficult for an employer to find appropriate work for the individual with CRPS.
In addition to the challenges of return-to-work planning, determining earning capacity or functional ability in cases of CRPS can also be difficult. As symptoms can fluctuate wildly, it can be challenging to predict what the individual’s work capacity will be on any given day. This can lead to uncertainty and difficulty in determining appropriate compensation or accommodations for the worker.
Furthermore, it may be challenging for individuals with CRPS to find employment in the job market. Employers may be hesitant to hire someone with a disability that requires frequent breaks, accommodations, or a limited work schedule. This can make it challenging for individuals with CRPS to find and sustain employment, leading to financial strain and a loss of independence.
In spite of these profound return-to-work (or stay-at-work) barriers, compensation boards remain reluctant to acknowledge these challenges. Part of the reason for this, in the author’s estimation, is willful ignorance at times. This is to say, do Boards believe that someone in the throes of a hellish CRPS flare-up is reasonably employable, could somehow retain new information, could perform well in an interview, could honestly claim to be a reliable worker? Or would WCB prefer that a worker conceal this information from a prospective employer? Because, the bitter truth is that most employers would not be well-served in hiring a person struggling with CRPS. And in the name of integrity and justice, WCB must recognize this self-evident truth.
CRPS isn’t completely disabling in every case. And WCB, in all but the most extreme cases of disability i.e., quadriplegia, is always slow to declare total and permanent disability. And there are good reasons for this. Namely, the Board seeks to avoid instilling a disability mindset in someone where any reasonable hope for recovery remains. This is because the Board is aware that rushing to conclusions can create a self-fulfilling prophecy of disablement and misery that could’ve otherwise, perhaps, been avoided. Placebo is a very real phenomenon after all.
Furthermore, personal dignity and self-worth are found in work. We don’t live on bread alone. Meaning and purpose are what truly sustain us. For many who successfully obtain total disability benefits, the thrill is often short-lived. Wage-loss benefits are sure to ease the terror of making the mortgage payment, but a benefit cheque is a paltry salve for the monotony and emptiness of a life devoid of routine and social connectedness provided by gainful work.
Now, could this be an overtly romantic and naïve depiction of the goodness of waking at 5am to battle rush hour traffic just to contend with impossible deadlines and a Draconian boss? Perhaps yes. Perhaps no. Only you can say what’s right for you. But for most of us, in our heart of hearts, we know that a life spent bingeing on Netflix in our pajamas is the path to shrinkage and decay. And besides, if not for the melodramas and forced routine of our daily jobs, what else would distract from the physical and psychological pain of existence? What else would durably divert us from a bottomless spiral of rumination, self-doubt, negative self-talk, and pettiness?
Steering the narrative back towards CRPS, each and every soul cursed with this awful disease will experience it differently. Despite the virtues endowed by work, for someone like Amy Pohl who’s sustained by a feeding tube and confined to bed, any Board-mandated return-to-work expectations would be inhuman and cruel. Where someone like Amy wants to return to the workforce, then it must be on her terms only. And in point of fact, what keeps Amy alive “is thinking about going back to work. I loved my job so much,” she says. “It was my life so I just want to get back to doing what I love.”
The road ahead
If I had it my way, workers’ compensation boards would compassionately encourage those with CRPS to return to work instead of imposing ultimatums and mandates. Likewise, in a perfect world, the medical consultants and contracted providers employed by WCB would educate themselves about a frightening condition that’s becoming more and more common. Because living with the agony of CRPS is hellish enough; having to likewise contend with skepticism driven by ignorance and arrogance is beyond human endurance.
But while it’s interesting to muse about a perfect world, the realm we actually occupy is highly imperfect. The fact remains that CRPS is clinically diagnosed. No definitive diagnostic test is considered to be a gold standard for CRPS. The pathophysiology of CRPS is still poorly understood. For these reasons and more, controversy will continue to swirl around CRPS for the foreseeable future. Furthermore, for those who developed CRPS following a workplace incident, your claim for compensation may be met with extreme resistance. This resistance is driven by policy reasons as much as anything else. Because just imagine if your claim for pain and suffering is accepted; it would open the door to all other claims for pain and suffering. Boards far and wide are afraid about the precedent it would set i.e., approved claim for CRPS today, approved claim for a toothache tomorrow.
Thankfully the news isn’t all grim. Where pharmacotherapy fails to improve a patient’s condition, spinal cord stimulation is proving to be very effective. It’s been shown that two-thirds of patients treated with permanent SCS implantations had improved function and normalizing of daily activities. More recently, understanding of the autoimmune etiology of CRPS has indicated the essential use of plasma exchange treatment, which has demonstrated benefits in other autoimmune disorders. In a clinical study, 91% of patients reported significant pain relief following plasma exchange.
Lastly, for those toiling for workers compensation benefits, keep up the good fight. Your efforts will ensure that, at some point, more WCB’s will take this condition seriously. The author of this article, who also happens to be an injured worker’s advocate, also strongly encourages you to consult with an experienced WCB rep. If you’ve got CRPS and you’re fighting for benefits, then there’s a lot riding on the outcome. That is precisely not the time to go-it-alone, when you’re trying to climb Everest. An experienced rep will be the Sherpa to guide your way to the summit.