How Chronic Pain Plagues Its Victims
Detailing the invisible illness that goes unseen and untreated
Friday, May 31, 2013: "I am scared."
Tuesday, June 4, 2013: "I am here physically, but mentally I am gone."
Tuesday, July 9, 2013: "Unless someone else has our health problems, they don't understand what we go through. We can tell them, but they don't truly understand what you go through, just as you can't truly understand what I go through."
These are all journal entries published as part of Karen Paddock's journey with chronic pain. On Aug. 7, 2013, at the age of 43, Karen Paddock used her dog's leash to hang herself and committed suicide after 24 years of living in constant pain.
Bob Paddock, Karen's husband, said he still has attacks of grief every once in a while, six years after his wife passed.
"You just don't know what might set it off," he said. "One day it was seeing a lint roller. We always had dogs, and Karen did obedience training, and she would make the dogs do downward stays in front of the laundry pile as part of the training. That lint roller was still there in the bathroom one day, and I saw it and just burst out bawling."
It started in 1989 when Karen got into a car accident and hit the left side of her head on the door jamb. Shortly after, she began to experience headaches that would only go away when she lay down – the first indicator that she had cerebral spinal fluid (CSF) leaks.
In 2003, Karen was prescribed the antibiotic Levaquin, a fluoroquinolone, for a problem that prevented her CSF leak treatments from working. It was this antibiotic that eventually caused her death by suicide. But before she took that ultimate step, the antibiotic left her unable to walk for years; instead, she was forced to crawl around the house using a skateboard-like invention.
In an attempt to find relief from her the pain the took hold of her life, Karen was constantly in and out of hospitals. Her experiences took her from her hometown near Pittsburgh to medical centers across the country.
Bob Paddock recalled a grueling experience at the Duke University Hospital, where his wife attempted to get help and was turned away, being called a "drug seeker."
"Karen was brilliant in many ways, but organization was not one of them," Paddock said. "She kept all of her medications in random Walmart plastic bags. As Karen was getting out of the van, walking in, she says, 'Bring in my medication to show them.' So, I came in with all the bags, and as soon as I saw her, I said, 'Oop, I did something wrong.'
"You know that look you get from a wife? As soon as the people there saw that they said, 'Oh you're here for drugs,' which made no sense at all because we had in our possession, that they saw, more drugs than they had. We didn't need anything from them."
Following that incident, Karen was turned away and sent home with no treatment.
This is becoming a more familiar narrative in the United States. Centers for Disease Control and Prevention (CDC) estimated 50 million adults were suffering from chronic pain as of 2018.
Little is being done to solve this problem proactively as the opioid epidemic continues to give a bad name to drugs that could provide pain relief to patients suffering from chronic pain.
In September 2019, the CDC discussed the National Center for Health Statistics report, which states that from February 2018 to February 2019, an estimated 69,029 people died of a drug overdose.
The Food and Drug Administration (FDA) then published a statement saying, "One of the highest priorities of the FDA is advancing efforts to address the crisis of misuse and abuse of opioid drugs harming families. Opioids are claiming lives at a staggering rate, and overdoses from prescription opioids are reducing life expectancy in the United States."
To counteract this, the FDA published its plan to decrease exposure and prevent new addiction. By doing this, the CDC and FDA have acknowledged that clinicians will change prescribing practices to reduce the number of opioids prescribed. If a doctor deems the usage level to be too high, it can result in an abrupt stop in opioid use or the lowering of doses significantly.
"It's become a political event," Bob Paddock said. "There just aren't statistics that show properly prescribed and properly taken pain medication has anything to do with all these deaths. The CDC lumps it all together with heroin deaths and fentanyl deaths, but if you're going to do this right, you're going to need proper statistics that separate those individual things."
The changes in practices to reduce the number of opioids being prescribed has left those suffering to turn to other alternatives like medical marijuana or holistic remedies, most of which are not covered by insurance.
Those who cannot afford these alternatives out-of-pocket are left to fend for themselves and the bleak existence they find themselves in.
Fortunately for Matthew May, 62, he is still able to still receive opioids to help his severe back pain. May has been battling chronic pain for over 40 years. In the 1990s, May was prescribed Vicodin for the first time by his personal care physician (PCP).
"That was fantastic. I mean, that would take the pain away," May said.
In 2005, May was diagnosed by an orthopedic surgeon with spondylolisthesis -- a spinal condition that causes the lower vertebrae to slip out of place. The doctor told him to come back when he could no longer walk, so when May found himself lying on the couch just trying to get himself together because the opioids no longer helped, he decided to get surgery to fuse his vertebrae so they could no longer slip.
However, the pain continued to come back even after surgery, so he saw neurosurgeon Raymond Sekula, who explained that May had a tethered spinal cord, which prohibited the spinal cord from moving freely.
After a second surgery, May was still in pain due to nerve compression. He described it as a man who has had his foot cut off, but his body refuses to forget the pain the compression had caused in that area.
He now takes Lyrica, among other opioids, to manage his pain.
"I've said this before to my doctor that if I was left without the Lyrica and the opioids, whether it was heroin or whatever it was, I'd have to do something to take away the pain or else I'd commit suicide," May said. "To be in that kind of pain, constantly, over time, is what people don't understand about pain.
"I've written to the governor, the state senator, the state representative, our two national senators and congressmen and basically said that I understand opioids are a huge addiction issue right now, and other people are suffering, but don't forget about us chronic pain people that it works for and helps. It gives me a life."
May said he starts every morning feeling the pain radiating from his lower back down through his toes.
"It's like clockwork," May said. "I wake up in the morning, and I feel it. I can almost tell you what time it is by where my pain level is."
By the time he can take his afternoon medication, he usually is in a massive amount of pain that affects his ability to work. May is the owner of a campground, which allows him the freedom to take a break when he needs to. Otherwise, he said he would need to be on disability.
He described that it takes a toll not only on the person experiencing the pain but close family and friends who are affected by the days where he may distance himself or act a certain way due to his condition.
Karen (left) and Bob Paddock, in one of their last photos together
Karen Paddock also touched on this in her journal, stating, "I am sure that this illness is hard on families, especially those that live with us. Some days, I have no problem believing in myself and that this illness is real. Most days, I struggle with believing that as true."
Karen was often told she was lying about her chronic pain, as the common problem is that there are no tests to indicate pain levels in a patient, and chronic pain may not be visible on the outside.
The region of the brain that activates when the body is in pain overlaps with the part that activates emotion, causing more mental hurdles, along with the physical pain.
A recurring issue is doctors treating chronic pain solely as a physical phenomenon and separating it from the mental problems it may cause. Doctors who have not experienced chronic pain personally or had a close family member or friend with chronic pain might not understand the emotional toll that constant pain has on someone.
Karen journaled that she would sometimes hear from doctors or peers, "'Forget about your headache and get on with your life,' and 'Get up and do something, you'll feel better.'"
In her journal, she wrote, "I actually believe it is a natural protective mechanism – I've experienced it myself. You look at someone whose life has gone to hell in a hand-basket, who has lost everything they cherished, whose life never gets any better, only worse, and you need to believe that they had a hand in bringing this on themselves, or in perpetuating it, or you need to believe they are making it up. Because if all of that misery can befall a totally innocent person… well, it would stand to than that… it could happen to me.
"That is the thought that is intolerable. That is the possibility that most people cannot admit that they cannot allow to be true, for it would shatter the illusion that life is predictable, that one can count on being rewarded for one's labors and one's vigilance. For those whose lives are comfortable, who have been richly blessed, that illusion probably is what keeps them going, gets them out of bed in the morning. I have to admit, it was lovely while it lasted."
To compensate for the time she spent lying down, Karen spent a lot of her time reading textbooks and trying to understand the reasoning behind chronic pain and how it can be solved.
Alberto Cabantog, a staff physician at Advanced Pain Management in downtown Erie, said pain management is a very complex issue.
Cabantog said the most effective solutions use a multi-disciplinary approach that is tailored specifically for each patient.
"Each patient is unique; hence, there is no 'one-size-fits-all' treatment," he said.
Cabantog said doctors must intently listen to their patients' complete history first and foremost. Still, with a greater emphasis being placed on medical professionals to examine patients very quickly, this becomes difficult.
To fix this problem, "Every step from the personal level all the way to societal level" needs to be addressed, Cabantog said.
Pam Duffin, 55, has been dealing with seemingly untraceable chronic pain for 15 years. Duffin agreed with Cabantog, saying that the medical industry, in general, needs to focus on wellness and genuinely helping a person instead of writing a prescription to get a patient out of the office faster.
"Whenever you have chronic pain, you want to know exactly what it is, and they just throw a term at you," Duffin said.
Along with doctors tapering off opioid usage, she believes that doctors are told to push certain drugs instead that could be just as dangerous.
"They get something, and they look at dollar signs," Duffin said. "I honestly believe that they, in a way, don't care what the outcome is for the patient. They are in cahoots with the pharmaceutical industry, and I think doctors are actually told what pills to push.
"A good example of that too would be 'quit smoking, start vaping,' and now look at what's going on with these vape things. It was supposed to be a healthy way to quit smoking, but now people are just dropping dead from that."
Even on TV, Duffin said she sees ads for medications where "the bottom line is it might help you, but it also might kill you."
Duffin has always been apprehensive about the medications she put in her body. After being misdiagnosed so many times, including a false diagnosis of fibromyalgia, and seeing various doctors, she has taken matters into her own hands.
Many of the medications she had taken were for illnesses she did not truly have, and the medicine she did take gave her side effects, such as violent seizures that would leave her incapacitated and in the hospital.
As a result, she became wary of pharmaceuticals, so after suffering chronic pain for so many years, she turned toward a more holistic route. Balancing on an exercise ball in her office for comfort, she talked about how her whole body aches, but lately, it has manifested in her hips and knees, robbing her of a good night's sleep and leaving her to grapple with the pain radiating throughout her body during the day.
In an attempt to ease the pain, she has tried cryotherapy, prolotherapy, essential oils, medical marijuana, acupuncture, yoga, massage therapy, and chiropractic therapies such as K-laser treatments and decompressions.
"It's a long road, and there are so many different things that they have you try- especially pharmaceutical-wise," she said. "Then there are things you try on your own until you find what works.
"Those of us who suffer with chronic pain are always looking for that silver bullet -- that one thing that's really gonna do it."
She pays for most of her treatments out-of-pocket. K-laser, one of the more effective therapies for Duffin, is not covered by her insurance, so she pays $240 for six 10-minute sessions.
K-laser provides relief by using wavelengths of light to increase circulation, decrease inflammation, and speed up the healing process.
May also said that without insurance, he would be forced to pay $1,000 a month for his Lyrica alone.
Even if an insurance plan says it will cover a certain treatment, it may only include three sessions, or it may only prescribe a medicine after there is documentation that five other medications have failed before that one.
Duffin thinks this is primarily due to the broken health care system in the U.S. and its focus on illness instead of wellness.
"I don't think the industry is looking to fix anything," Duffin said. "It's a business -- it's not about making you better, and that's sad.
"The whole system needs to change. It needs to change from a system of managing illness to a system of managing wellness."
This starts at the beginning of each prescriber's journey -- medical school.
In 2018, the Association of American Medical Colleges published an article that discussed how the widespread issue of chronic pain and ill-informed doctors needs to be resolved with new curriculum surrounding pain management and medication in medical school.
In a 2016 Senate hearing about the opioid crisis, Nora Volkow, a medical director who is the director of the National Institute on Drug Abuse, said, "[I]f you're a veterinarian, you get much more training on how to address pain than if you're a medical student."
That being said, Congress has continued to criticize medical schools for their lack of pain management education.
Duffin said there needs to be more of a push to make medical school become wellness school and focus on preventing illnesses, rather than treating them. Even with students who are not going directly into the medical field, she feels people must know the ins and outs of physical anatomy, and how acute pain does not have to lead to chronic pain.
She recalled a time she visited a local recreation center and was appalled by the way the trainers were allowing people to twist their necks and backs. Where other people saw a hard workout, Duffin saw herself years ago in a stage that could have helped her prevent the pain that now affects her everyday routine. She said exacerbating pain can be one of the worst things you could do, transitioning from what may be an acute pain to a chronic illness.
With lots of voices speaking out about their chronic pain, the call to action is prevalent, but it all starts with listening. Whether it is Karen Paddock, Pam Duffin, or another patient suffering from chronic pain, the consensus is that the first step to overcoming this issue is by believing there is a problem.
Bob Paddock urges people with loved ones in pain to spend as much time as possible with them because you never know how much more pain they are able to endure. But most of all, he emphasizes a point he said he wished more people would understand.
"Believe them," Paddock said. "The journey is theirs -- follow their lead."
Chloe Forbes can be reached at firstname.lastname@example.org