Janice Lynch Schuster was the kind of person who never got sick, because she “didn’t have the time.” A writer for a health research institute, mom to six kids and a boxing hobbyist, Schuster considered herself a healthy 51-year-old. But in January 2013, she developed a sudden throbbing pain in her tongue. When topical treatments failed to relieve her swollen salivary glands, her dentist referred her to an oral surgeon who suggested a lingual frenectomy, a procedure to remove the band of tissue between the tongue and floor of the mouth. It was described as “just a snip,” but the result was so painful that even after the stitches healed, the pain remained unbearable, transforming into an entirely new injury. On bad days, Schuster can’t talk or eat. Schuster wrote about her experience managing and living with chronic pain in this month’s edition of the journal, Health Affairs.
PBS NEWSHOUR: In your article, you say physicians often view chronic pain sufferers with skepticism or disbelief. Why do you think that is?
SCHUSTER: Well I think there are a couple things that contribute to that. From my experience, they can’t see your pain. It’s not like you have a fever. They can’t categorize it, and they can’t measure it very well. It’s subjective and based on what the patient says. There are times where it’s hard to communicate what kind of pain you’re in and because everyone has a different tolerance level for pain, it makes it hard for clinicians to understand what kind of pain you’re experiencing. I think the other problem has become the opiate epidemic, or the painkiller epidemic. Clinicians tend to be pretty skeptical that people are just pill seeking. Those two forces contribute to the under-diagnosis of pain.
NEWSHOUR: Pain from an injury or from recovery can transform into an entirely new affliction. How does this happen? When it happens, how do you know which specialist you need to see? The doctor who treated the problem that caused the pain, or someone who deals with pain management specifically?
SCHUSTER: There is a condition, Complex Regional Pain Syndrome, where people have an outside physical reaction to any assault on their bodies. Surgery can trigger a reflex syndrome, and they think that might be what I have. What might be a routine, minor procedure, my body responded to it as if it had been this major assault. That’s not a common occurrence but for people who do have it, it’s devastating because it starts off this whole pain reaction. In addition to just trying to heal from the surgery itself, you suddenly have this lifetime of chronic pain. The best thing from my experience is to talk to the physician who originally treated you. You can’t just call a pain management specialist. They’re not likely to see you without referrals from other people. In my case, I had to keep seeing oral surgery experts to try to figure out what exactly happened that caused the pain.
NEWSHOUR: Can you talk about the relationship between chronic pain and depression?
SCHUSTER: One emergency room doctor asked if I was depressed, because he had never met a pain patient who wasn’t depressed. The experience of just constantly being in pain, it just saps your energy, saps your joy of experience in your life. It narrows the scope of what you’re able to do.
I have had a lifelong history of depression, for which I seek treatment when needed. A psychiatric nurse practitioner sees me every three months to manage that aspect of care, and I work with a therapist to try to cope with various life stressors. I use an iphone app called “Calm” and try to do at least 10 minutes per day of a guided meditation, and I have also been working to learn to meditate–not my strong suit, but I keep trying as it is supposed to be very effective. I should also note that I am fortunate to work for an organization, Altarum Institute, that accommodates my health conditions by allowing me to telework several days each week so I can hibernate and suck on ice chips when I’m having a lousy day.
NEWSHOUR: Antidepressants aren’t typically known for pain relief, but you say they have an important role in reducing pain. Can you talk about that? How effective are they?
SCHUSTER: Researchers think that the more depressed you are, the more likely you feel pain or the less likely you are to be able to distract yourself from the pain. So treating the depression sometimes helps alleviate the pain because it gives you the energy to deal with the alternative treatment methods that they recommend.
NEWSHOUR: How did OxyContin morph from a “godsend” painkiller to a widely-abused medication?
SCHUSTER: In the late 90s when they first started promoting problems with the undertreatment of pain, they started touting OxyContin as a miracle drug for pain relief and that people would not become addicted to it and would only use it to the extent they needed to manage their pain. And it turns out, that that’s not true. Now we have the widespread abuse of prescription pain medication because you do become physically dependent. Many people become addicted to them and do become pill seeking patients and they do bounce from doctor to doctor trying to get more OxyContin. There’s also some evidence that they’re trying to decrease the OxyContin prescription has led to an increase in heroin use because heroin has similar effects and is a lot cheaper. So it turns into a game of Whack-A-Mole of trying to control this prescription pain medicines and avoid fueling a heroin epidemic.
NEWSHOUR:What steps is the FDA taking to reduce addiction to painkillers?
SCHUSTER: They’re trying to restrict access. When I first got prescriptions after the surgery, the doctor could call in a prescription to Percocet. But they can no longer do that. You have to go into the doctor’s and take the paper prescription into the pharmacy itself. It reduces fraud. It’s ironic though because the same week they put in those restrictions for Percocet and other drugs, they tightened up prescribing, but approved this prescription called Zohydro even though 11 of 13 FDA advisors disapproved because of its abuse potential. They approved it anyway. They think that it will take four to five years to make it abuse-proof. In that period, it is sure to be abused by many people.
NEWSHOUR: How do you make a drug abuse-proof?
SCHUSTER: They did it with OxyContin. When it first came out, it came as powder in a capsule so it was easy for people to take it apart and crush it, snort it, inject it. They make it now so that if you break apart the tablet, you can’t crush it and get the same effect.
NEWSHOUR: Have you ever personally struggled with pain medication addiction?
SCHUSTER: No, I have not. Not everyone who uses Rx painkillers will become or is at risk of becoming an addict, although people do become physically dependent on the medications. For instance, if I am having a relatively good day and can get by with just Tylenol and Ibuprofen, I still have to take small doses of the pain pills, or I will experience withdrawal symptoms. This happened once, after I had a stomach bug, and it was an awful and terrifying experience.
In addition, I quit drinking alcohol in January 2013. While I am on these medications, it’s just not an option. Fortunately for me, the pain medication does not make me feel euphoric or relaxed or happy, it just blunts the pain. I also do not like the side effects, which include constipation and stomach upset. So I take as little medication as possible. When I do finally stop, I will need to be weaned from them under medical supervision.
NEWSHOUR: What kinds of problems occur at the pharmacy?
SCHUSTER: The pharmacist refused to fill my prescription because he thought it was too high a dose. He had filled the previous prescriptions and called the pain expert I was seeing and got into a debate with him over the phone. I had to go back to the pain clinic, go back to the CVS, all the while experiencing humiliation because of the pharmacist across the counter. It was a humiliating experience. It actually turned out that the reason he didn’t want to fill it was because it was a high-volume pharmacy and the DEA comes after pharmacies that sell too many opioid prescriptions. It’s that kind of thing, that constant scrutiny.
NEWSHOUR: What role did an online community have in your pain management?
SCHUSTER: They were great. I’m part of a closed community for people who have burning mouth syndrome. They don’t really know what causes it. A lot of people who have dental errors wind up with it. I could go into that group and say, “I can’t function today. I can’t eat, I can’t talk.” There are about 800 people in the group and people immediately respond and say “I’ve had days like that. It will get better” or “Have you tried this toothpaste?” or “Don’t forget to suck ice chips.” It was just a great help to have other people say, “I’ve been in your shoes. You will have a better day.” Sometimes I’ll see other people’s experiences and I can say to them, “Hang on” to acknowledge it’s awful. We’re inclined to say to people, just buck up and get on with it. Get out of bed. But actually, what helps me a lot is when people say “It is really miserable. I’m really sorry this has happened.” It’s taught me to have a lot more empathy for people who have pain problems.
NEWSHOUR:You talked about alternative strategies: keeping a pain journal, monitoring triggers, herbal remedies, medication, yoga, etc. What has been most effective for you and why?
SCHUSTER: For me, it’s been exercise. When I finally got myself back together again to get back to the gym. I go to Zumba for an hour. My pain will diminish for three to four hours afterwards. Someone told me it’s because you release so much adrenaline when you’re dealing with a real high-energy exercise and adrenaline is a pain killer. In my case, I know it’s Zumba. I bargain with myself to stay for at least 15 minutes and I usually stay for the entire class. Whatever works. It helps to have really small, measurable things I can get done.
One of my children has developed a chronic health problem that includes a lot of pain. I say that to her, if she can do 10 minutes, then you get a little boost. I think I’m much more empathetic had I not endured this myself. If I hadn’t, I’d say to her “Get up, get out of bed.” I would not have had the heartfelt understanding of how it feels. I still try to encourage her to get up and get out of bed but I also acknowledge that it’s an awful situation to be in.
NEWSHOUR: How has this affected you financially?
SCHUSTER: I see the pain doctor and a therapist all the time. Last year, I hit the maximum amount for out-of-pocket expenses. It’s kind of disheartening. But once you hit the catastrophic level or something, you don’t have to pay anything. I had something like 30,000 in medical expenses last year.
NEWSHOUR: What about pain patients who don’t have insurance?
SCHUSTER: I have often wondered that when I go to the pain clinic. I see a lot of much older people in very poor health who are there and I wonder what it must be like for them. My copay is $15. Some people come in with high deductible plans, and they have an $80 copay. If you’re living on social security, $80 is a lot of money. A urine test at the pain clinic is $1,000. If you don’t have health insurance, you can’t access this care. When I’ve had to go back and forth when the pharmacist didn’t fill the prescription, I thought, at least I can drive. I see some people in this clinic who are pretty hobbled over and wheelchair bound. What would they do? I don’t really know. I’ve read that when people can’t access legitimate pain prescriptions and are really desperate, they will turn to street drugs and or heroin.
NEWSHOUR: In your piece, you said the Institute of Medicine (IOM) calls pain management a “national challenge” that requires a “cultural transformation.” Can you explain?
SCHUSTER: I guess in my class, it’s an invisible condition. If you saw me and didn’t know me, you wouldn’t know that I have this problem. People who know me well can tell when I’m having a bad day because my mouth apparently twists up. But if you know somebody that has some sort of invisible condition, you can never offer enough empathy to them.
We really need to recognize the effect pain has on other people’s ability to just function and be contributing members of society and to lead happy lives. From what I understand, there hasn’t been much research in the treatment of pain and the opioid prescribing. Clinicians need to have a better understanding of what pain is and what it means in people’s lives to take a more holistic approach in treating it. It really means more than giving someone a prescription for painkillers or telling them to take Tylenol.
For policy makers who allow access to restricted treatment, we really need to have more of a conversation about how to improve quality of life who suffer from chronic pain.