For Those Suffering Chronic Pain, The Hardest Part Is Convincing Others

Chronic pain affects tens of millions of Americans and for many of them, there is no cure. We hear from three sufferers about what they've lost and what they've learned.

RACHEL MARTIN, HOST:

This is WEEKEND EDITION from NPR News. I'm Rachel Martin. And this is For The Record. One hundred and sixteen million - that's the estimated number of Americans who suffer from chronic pain. That's roughly a third of the entire population. According to the National Institutes of Health, chronic pain is any pain lasting longer than 12 weeks. The Institute of Medicine estimates chronic pain costs the U.S. up to $635 billion a year in medical expenses and lost wages. And a new study of the nation's pharmacy records says the number of Americans filling prescriptions for opioid painkillers has declined. But the people who are getting those drugs are using them for longer. For The Record today - living through pain.

LEO KAALBERG: My name is Leo Kaalberg. I'm a former sergeant from the United States Army. I have chronic nerve damage.

COURTNEY WEATHERBY-HUNTER: My name is Courtney Weatherby-Hunter. And my pain is in my neck and shoulder area.

KATE LEIDY: My name is Kate Leidy, and I have fibromyalgia. Fibromyalgia is a musculoskeletal - I always have a hard time saying that word. It's basically a nerve disorder.

MARTIN: These three people are all in their thirties. And chronic pain has had a debilitating effect on them. But they suffer pain for very different reasons. Courtney Weatherby-Hunter's pain is the result of one bad decision.

WEATHERBY-HUNTER: After a night out with friends I decided to get on a mechanical bull. And I fell off.

MARTIN: I'm sorry. I shouldn't laugh. I shouldn't laugh.

WEATHERBY-HUNTER: No, it's - yes. I've told the story many times, and that's the response I get. I remember just feeling pain in my neck, but because I had had a few drinks I just never really put two and two together that maybe I was more hurt than I actually felt.

MARTIN: Then there are those like Kate Leidy who aren't exactly sure where the pain comes from, although she can trace it back to a deep emotional wound when her two-month-old baby died from prematurity complications. This was a few years ago. And since then Kate has suffered pain pretty much everywhere.

LEIDY: Yeah, it could be all over. It could be located in one part of your body like your back or just your legs. But for the most part it travels around your body.

MARTIN: And Leo Kaalberg - he was on his fourth tour as an Army medic in Iraq when his convoy was struck by a rocket-propelled grenade. After many surgeries and physical therapy, he is thankful to be alive. But he lives every day in pain.

KAALBERG: I still have quite a bit of shrapnel that's embedded in my skin. It's just - it's almost too much to count.

MARTIN: This is a weird question, but what does the pain feel like? Can you try to describe it?

KAALBERG: It's just a constant aching. Anytime there's a weather change you feel it. I guess you can kind of feel the metal get colder faster in your body.

MARTIN: You can feel that in your jaw?

KAALBERG: Yeah. I still have, at times, pieces of shrapnel work themselves out. And they'll blister up through the skin. We actually keep them, so...

MARTIN: You keep them?

KAALBERG: ...A little morbid collection of twisted little shrapnel pieces.

MARTIN: All three of these people told us that one of the most difficult parts of living with chronic pain can be getting people to just believe you when you say you're hurting. Kate was finally diagnosed with fibromyalgia, but it took a long time for that to happen.

LEIDY: Two years of - from doctor to doctor - I've had doctors tell me there's nothing wrong with me, that it's all psychosomatic.

MARTIN: After popping pills for months on end Courtney Weatherby-Hunter went to what she calls pain camp. It was run by the Mayo Clinic. She was the youngest person there.

WEATHERBY-HUNTER: You know, day one of the program I had another patient come up to me and say you don't look like you belong here.

MARTIN: For a lot of people the first line of defense is painkillers. For some that can mean lots and lots of pills. Can I ask what medications you're taking?

LEIDY: Do you want to hear all of them?

MARTIN: Yeah.

LEIDY: OK. I take Butrans. I take Lyrica. I take Wellbutrin. I take Cymbalta. I take Vicodin, Percocet and ibuprofen.

MARTIN: Kate Leidy's doctors have been resistant to keep prescribing her heavy painkillers. There are obvious concerns about addiction.

LEIDY: You sort of have to make your case for taking pain medication. You have to go into your doctor with sort of your list of notes and defend your right to relieve your pain.

MARTIN: At one point Leo Kaalberg was alternating regularly between Percocet and Vicodin, then in 2011 his doctors of the VA stopped prescribing the heavy pain meds. He insists he was not addicted. But when he went on off them, he went through withdrawal.

KAALBERG: My hands were shaking really bad. I'd start getting kind of waves of pain and nausea. So it got - it was pretty rough.

MARTIN: Now he treats his pain as best he can with over-the-counter medicine - Tylenol, Motrin and bags and bags of ice. There's also the inevitable impact on relationships. Courtney Weatherby-Hunter's chronic pain has made her someone who ends up canceling at the last minute. And that has strained friendships.

WEATHERBY-HUNTER: I was a person who always said yes to things, and I became a person who more than likely had to say no to a lot of things.

MARTIN: For Kate Leidy, the hard part was convincing her husband about her pain and her need to self-medicate. He's still worried about how many pills she takes.

LEIDY: He helps me keep it in check - checks my pills. We do kind of check-ins. On a couple weekly basis just to make sure I'm staying on track.

MARTIN: Leo Kaalberg's pain has changed his entire family dynamic.

KAALBERG: My wife, God bless her, she's an amazing woman, and she puts up with me. She tries to get in between me and the kids when it comes to most - just about everything. Not that we have, you know, a physically abusive relationship or anything like that. It's just they don't understand that once my pain starts amping up towards the end of the day I get a little bit snippy and short with them. So...

MARTIN: How old are they?

KAALBERG: My oldest is 13. And we have a 10-year-old, an 8-year-old and a 6-year-old.

MARTIN: So those are little kids who want attention from you.

KAALBERG: Yeah. It's hard for them to understand that I can't pick them up anymore. I can't throw them around. I can't wrestle with them. I guess their hardest thing for them to understand is that where they can stub their toe or smash their finger a little bit on something, you know, the pain is over within a couple minutes. They don't understand why me being their dad, their superhero and all that that I can't just snap out of it.

MARTIN: After years of trying everything from pills to alternative therapies, Leo Kaalberg, Courtney Weatherby-Hunter and Kate Leidy have learned to manage their pain to varying degrees. For Leo, distraction is key.

KAALBERG: I mean, I have four dogs at home. So I spend a lot of time with my dogs, and they help me out. It's really about focusing, trying to keep my mind off of it.

MARTIN: Courtney keeps the pain at bay with the help of meditation. And she is saying yes to things again.

WEATHERBY-HUNTER: Just this year I've signed up to run a half marathon in February. I'm exercising. I am sleeping well. And honestly I don't think about the pain every day. I know that it's there, but it is not something that defines me anymore.

MARTIN: And Kate - she has learned to change her expectations.

LEIDY: I would love to be off all of my medications and be living a life that is pain-free. I mean, that's obviously - that's the ultimate goal. I try to not think in those terms, those broad terms, because it can get pretty overwhelming.

MARTIN: Instead she is living one day, sometimes one hour, at a time.

Copyright © 2014 NPR. All rights reserved. Visit our website terms of use and permissions pages at www.npr.org for further information.

NPR transcripts are created on a rush deadline by Verb8tm, Inc., an NPR contractor, and produced using a proprietary transcription process developed with NPR. This text may not be in its final form and may be updated or revised in the future. Accuracy and availability may vary. The authoritative record of NPR’s programming is the audio record.