Disability Informatics & Information Open Resources
Patients with chronic pain are people who are in pain for more than 12 weeks. It can be hard for patients with chronic pain to get care. This essay answers these questions:
While the lay-person may expect the causes of chronic pain to be primarily musculoskeletal in nature, chronic pain can have a variety of causes. This resource will discuss a few of the most common causes of chronic pain such as environmental and postural, disease, and psychological (Ratini, 2018). There are also chronic pain conditions such as Chronic Pain Syndrome where the etiology is unclear and still being studied (Singh, 2019).
Environmental and postural etiologies of pain include back, neck, and shoulder pain that develops over time. Posture, quality of shoes, and work environment can all be risk factors for this cause of chronic pain (Ratini, 2018). A common type of chronic pain caused by the environment or posture is Carpal Tunnel Syndrome. The carpal tunnel is a thin tunnel of bones and ligaments within the wrist. This tunnel can become compressed and inflamed leading to chronic pain in the wrist, arm, and hand. One of the common causes of Carpal Tunnel Syndrome is repetitive hand motions, such as those that workers may experience with frequent use of tools and technologies requiring fine motor skills. (NINDS, 2017)
Many diseases can cause chronic pain, but not all diseases that can cause chronic pain always present with pain as a symptom. For example, cancer may cause chronic pain, but it can go undetected because it doesn’t necessarily cause physical pain, especially in its earlier stages. Three of the many diseases that are notorious for causing chronic pain include osteoarthritis, rheumatoid arthritis (RA), and fibromyalgia. (Ratini, 2018)
Here are brief definitions of each of these conditions:
Chronic Pain Syndrome (CPS) is an example of chronic pain that doctors believe may be psychological in nature. Not much is known about this condition and patients with CPS may often have multiple comorbidities that exacerbate and contribute to symptoms CPS patients experience. There are many theories about CPS and other chronic pain conditions which don’t have known physical etiologies. Singh (2019), notes that “Patients with several psychological syndromes (eg, major depression, somatization disorder, hypochondriasis, conversion disorder) are prone to developing CPS.”
It is important to note that mental illnesses such as anxiety and depression are common among pain sufferers, and that the physical manifestation of these mental illnesses can lead to chronic pain. As well, chronic pain patients may develop these conditions secondary to their pain or medication (Osterweis, Kleinman, and Mechanic, 1987). One theory of psychosocial cause of chronic pain is that patients will experience a painful stimuli, the stimuli will be rewarded in some way, and that the pain will continue without clear cause because the patient is unconsciously seeking the reward they initially received in response to the painful stimulus (Singh, 2019).
There are so many different causes for chronic pain, that addressing them all is beyond the scope of this resource. However, to learn more, visit the American Chronic Pain Association’s list of conditions for information and resources specific to conditions from Acute Pain to Whiplash, and everything in between.
There are many chronic pain communities online. Often, these communities are part of a larger chronic illness community, in which people discuss their chronic conditions. In some cases, people who have chronic pain and chronic illness refer to themselves as “spoonies” and you may encounter this term when interacting with pain patients online. This term comes from a theory known as the Spoon Theory which was created by Christine Miserandino, a college student with lupus. Miserandino created the theory to explain how lupus impacts her life and how living with chronic pain or a chronic illness affects the energy patients have to expend each day. You can learn more about this theory by reading Pain Doctor’s article What Is A Spoonie, And How Can The Concept Help You? or by reading Miserandino’s narrative blog post in which she introduces the Spoon Theory on ButYouDontLookSick.com.
Ancient and archaic cultures often believed that chronic pain was a result of magic, spirits, demons, punishments by the gods, and other similar causes. This is consistent with other ways in which they explained other things for which the cause was unknown. Treatments did often include the use of plants like the coca plant (in South and Central America) and opium (across Eurasia). Often, these plants, which both have effects on a person’s mental state, were also used for religious purposes, and use of these plants for healing purposes may also involve the practitioner’s form of worship. There were also some specific treatments for specific ailments that may not involve religious or magical practices, such as the use of electric eels to treat fibromyalgia and headaches in Egypt, Greece, and Rome. (Sabatowski, Schäfer, Kasper, Brunsch, and Radbruch, 2004)
Similar to ancient civilizations, Christian Europe through the Middle Ages and Renaissance centered a lot of their pain treatment on religious belief. For example, it was thought that praying could cause one’s pain to go away and that in some cases, pain was the result of sin, whether conducted by that individual or a close family member. (Sabatowski, Schäfer, Kasper, Brunsch, and Radbruch, 2004) While these attempts to treat pain were likely well-intentioned, a lack of understanding of the human body and subsequent negative beliefs about magical, demonic, and religious causes of pain likely attributed the the foundation of some of the negative beliefs about pain patients in the modern world.
Once adopted by English physicians, opium was widely used by members of English society for both pain treatment and recreation, by way of ingestion. The dangers of opium addiction where well-known, but many still believed uncut opium to be a pure and harmless substance that could ease all suffering. Literary circles were particularly fond of this substance and abused it well into the 20th century. (Sabatowski, Schäfer, Kasper, Brunsch, and Radbruch, 2004) Opioids have historically been a successful treatment plan for pain, but are complicated by the fact that they are addictive.
One other example of a historical precedent for ineffective and discriminatory treatment to patients with chronic pain, regards patients who developed “railway spine” (a condition similar to whiplash) as a result of train collisions. Railroad conductors did not want to compensate patients, since they could not see a visible source of the pain. (Zhang, 2017)
There have been multiple recent cases of skyrocketing drug costs for life-saving medications. Two EpiPen autoinjectors could be purchased for $94 in 2007, but since Mylan acquired the rights to these medicines, the price has risen to over $700 (Hulisz and Dailey, 2018). Insulin has become so expensive that many diabetic patients are rationing the vials of this hormone that keep them alive, sometimes at the expense of their own lives (Prasad, 2019). These are just two of the many examples of American healthcare and insurance do not effectively serve patients, particularly those who are financially disadvantaged.
Laura Kiesel, who has Ehlers-Danlos Syndrome, wrote a piece on the cost of pain for the Harvard Health Blog. Not only do pain patients have to pay for their medication, many of the ergonomic and nonpharmacological supports they use are not covered by insurance. In addition, many practitioners are recommending nonpharmacological therapies and treatments, such as yoga and acupuncture, which can be costly and usually aren’t covered by insurance. Kiesel said, “Recently I attended a seminar on the topic and was immediately struck by the lack of attention to the expense of the nonpharmacological treatments being advised to take the place of opioids.”
People with chronic pain are at greater risk of being unable to afford their pharmaceuticals, because they are also more likely to need time off work to manage their conditions and symptoms. Due to racial inequalities, disabled Black, Indigenous People of Color (BIPOC) are at even greater risk. As Showing up for Racial Justice (SURJ, n.d.) states, “Ableism works as a mechanism of white supremacy, capitalism and colonization by devaluing disabled* bodies and minds as unnatural, invalid and unworthy across the lines of race, gender, poverty and citizenship.“
As discussed in the section on Historical Treatment of Chronic pain, opioids have are a successful treatment plan for pain, but are complicated by the fact that they are addictive. In the 1980s, doctors who had been taught to prescribe opioids as a last result for pain management began questioning this practice after a series of articles called into question the likelihood of dependency when prescribed and monitored closely. This caused a rise in the number of opioid prescriptions and subsequently a rise in the number of addictions. However, as doctors reduced the availability of prescribed opioids in response to the rate of addictions, the use of illicit opioids (such as heroin) surged. (Correll, 2018)
As doctors and officials scramble to try to reduce opioid abuse, a variety of barriers emerge threatening the effective treatment of chronic pain patients who manage their pain by taking opioids. New barriers rise in the form of policy and law. On common legal document patients on opioids are asked to adhere to is a pain management agreement, which provides stipulations on a patient’s use of opioids and other medications to reduce the likelihood of abuse. These vary between pain clinics, but Sherri Gordon (2018) lists five of the common tenants patients may expect to find on such agreements:
Each of these statements can be a major inconvenience to pain patients. The first tenant means that patients cannot fluctuate their use of their prescription based on their symptoms. The third and fourth tenants may affect whether a patient has access over their medicines, which may not be replaced if lost or stolen, or which may be monopolized at one location due to unexpected transportation concerns, travel, holiday, and inclement weather. (Gordon, 2018)
The fifth tenant means that chronic pain patients may not be prescribed pain medications by other providers even when it routine for those providers to prescribe medications. This means that someone who has signed one of these agreements can’t be prescribed pain medicine by their dentist for a toothache. It also means that if a pain patient is admitted to the hospital under emergency circumstances, they can’t receive emergency pharmacological support for pain, or that they violate their contract and risk losing access to treatment for their pain. (Gordon, 2018)
Finally, the second tenant means that patients are subjected to random drug testing. This is why patients must take their prescriptions EXACTLY as prescribed. Taking a lower amount of medication can lead doctors to believe the patient has been selling their medication. Taking a higher dosage to cope with flares of their condition can cause doctors to believe the patient is abusing the medication. Testing positive for other drugs, such as marijuana (which can also be used medically) may also result in redaction of prescription privileges depending on the provider and agreement. Additionally, some providers expect patients to pay the copay for the drug test, which can be difficult for economically disadvantaged people who have chronic pain conditions, because they can be hit with an extra invoice at anytime. (Gordon, 2018)
Another problem with drug testing of pain patients is that providers are given agency in their decisions whether or not to revoke prescriptions. This allows providers to make decisions about whether to revoke a patient’s prescription based on not only the results of the test, but also any biases they have. Since the testing is random, there are also no restrictions on how often a patient may be drug tested. A study conducted by researchers from Yale found that this lack of standardization combined with doctor’s preconceived notions about Black patients led to them being drug tested more frequently than white patients, and having their prescriptions revoked at a much higher rate even when controlling for the difference in frequency of testing. (Kashef, 2018) This is a problem, but the implications of exactly how much of a problem it is can be put into perspective by the fact that white people are more likely to abuse opioids and that Black and Latinx patients report higher rates of fear of addiction (Wyatt, 2013). Additionally, although women are more likely to experience chronic pain, they are also less likely to be believed. This is especially true for Black women (who experience higher rates of autoimmune conditions like lupus). Alexandra Moffett-Bateau (2014), a Black woman with lupus reports that her doctors “were more willing to believe that I was a drug addict than a PhD candidate.” (Moffet-Bateau, 2014)
A Guide to 360-Degree Virtual Tours for Accessibility in Physical Spaces