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In the mid-1990s, model and actress Karen Duffy had a contract with Revlon, a spot on People magazine’s list of the most beautiful people in the world and a date with actor George Clooney to the Emmy Awards. She also had a persistent, piercing headache that prompted her to see her physician.
Duffy was diagnosed with sarcoidosis of the central nervous system, an inflammatory disease in which the immune system creates lesions. Since then, Duffy has had these lesions form on her brain, central nervous system and lungs. In her book on dealing with chronic pain (CP), she writes of how she initially hoped that treatment would bring her body and life back to normal. The pain, however, has been endless and something she has had to confront continuously.
Sadly, many CP patients do not feel they can live with their ongoing agony. According to a 2009 study in the journal Pain Medicine, CP patients have a higher rate of suicide compared with people who have short-term pain or those who are pain-free. Clinicians struggle to classify CP; some scientists say pain management has been overlooked for too long.
Experts typically consider CP to be pain lasting more than three months, or past the expected healing time. There are two types — primary or secondary pain. Primary is when the pain is the main or only concern. Examples include migraines, lower back pain and irritable bowel syndrome.
Secondary is when the pain is the result of a disease or condition. CP can be post-surgical, cancer-related or due to conditions like temporomandibular joint disorders (TMJ). Many CP sufferers do not fit neatly into one category, which can make treatment more challenging.
As many as 1 in 5 Americans live with CP. Back, hip, knee and foot pain are the most common sources of CP. Globally, as much as 30 percent of people have CP, with back and neck pain being the most commonly cited sources of pain.
Some CP sufferers turn to massage or physical therapy for relief. But for many people, the pain is unmanageable and interferes with their quality of life.
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Researchers are learning more about what it means to live with CP. A 2015 literature review in The British Journal of Clinical Psychology found that CP is associated with depression, anxiety and anger. CP patients also feared pain that was specifically related to their condition.
In their daily lives, people with CP are more likely to miss work. Others struggle to sleep and then have to battle to make it through their workday. The constant pain and exhaustion make it difficult for some people to carry out simple daily tasks like carrying a laundry basket up a flight of stairs or sweeping the kitchen floor.
In this 2022 study, CP patients described themselves as living a life they no longer recognize. Their lives feel fragmented into who they were before and who they were after the pain set in. Once vibrant people find themselves fatigued after work and desperate to go to bed. Others describe how they can no longer work and feel depressed by their empty days. Many mourn their lost joys, like the physical activities they used to do.
“So, everything — my whole life changed to just being able to walk and ride a bicycle for a little bit. That’s about it. So, all my other sports and activities are gone out the window,” said one of the study participants.
CP also disrupts patients’ social lives. Pain or fatigue forces people to cancel plans or decline invitations. As a result, many CP patients have smaller social networks and have to cope with social isolation.
Many CP patients admit that, as a result of their struggles, they have considered completing suicide as a way to end their suffering.
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CP patients are about five times more likely than people with no pain or acute pain to have suicidal ideation (SI) — a desire to die. Some studies have found that between 15 to 23 percent of CP patients have attempted suicide.
Although researchers are still trying to understand SI and CP, there seems to be a pattern in the type and intensity of the pain. Back pain, for example, is more associated with an increased risk for suicide than other CP-like neuropathic pain.
Researchers want to better understand risk factors so they can develop targeted interventions. Two major risk factors involve whether the patient is depressed and has a tendency to catastrophize (meaning they see their situation as severe and unfixable).
An increasing concern among clinicians is whether restrictions on opioid prescriptions will harm chronic pain patients who depend on pharmaceuticals for relief. A 2017 study in General Hospital Psychiatry found that abruptly stopping opioid prescriptions increased the risk for SI.
In late 2022, the Centers for Disease Control and Prevention issued new guidance that acknowledged many pain patients could take opioids safely. The Food and Drug Administration has also warned physicians that cutting a patient off from their prescription can cause severe withdrawal symptoms.
While some advocates argue that safe opioid use must be protected, others say that pain management needs to be better researched so that clinicians are better able to identify sources of pain and offer treatment options that provide patients with both relief and hope.
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