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Could The Cure For A Rare Chronic Pain Disorder Be More Pain? : Shots

"I just went to bed as normal, and then all of a sudden … my hips … they just hurt unimaginably!" Devyn says. "It was around midnight, but the pain was so intense she couldn't stop herself – she was so loudly she woke her mother, Sheila." Together they did everything they could to neutralize the pain – stand up, lie down, hot bath, pain medication. But there was no escape, not for Devyn, and so for Sheila."You go to cancer first, right? It's like," Ok, maybe you have cancer, maybe it's a tumor? " "Sheila says.When she was calm enough to reason with herself, Sheila decided cancer was improbable, but what was going on? The only thing they could think was that the hip pain was somehow related to the minor knee surgery Devyn had gotten a few months before – she'd broken the tip of her distal femur one day during dance practice.So as usual, Sheila snapped to attention to solve the problem. It was 2016 – surely modern medicine could fix this. (NPR is not using Devyn's or sheila's last name to protect Devyn's privacy as a minor discussion on medical treatment.)They started by calling Devyn's surgeon, but the surgeon had no explanation for the pain. He renewed Devyn's prescription for Percocet, and wrote a new prescription for Tramadol. But the pain only got worse, so they lined up more appointments: their pediatrician, a naturopath, a pain specialist, a sports medicine doctor.Every doctor's visit was the same.…

“I just went to bed as normal, and then all of a sudden … my hips … they just hurt unimaginably!” Devyn says. “It was around midnight, but the pain was so intense she couldn’t stop herself – she was so loudly she woke her mother, Sheila.” Together they did everything they could to neutralize the pain – stand up, lie down, hot bath, pain medication. But there was no escape, not for Devyn, and so for Sheila.

“You go to cancer first, right? It’s like,” Ok, maybe you have cancer, maybe it’s a tumor? ” “Sheila says.

When she was calm enough to reason with herself, Sheila decided cancer was improbable, but what was going on? The only thing they could think was that the hip pain was somehow related to the minor knee surgery Devyn had gotten a few months before – she’d broken the tip of her distal femur one day during dance practice.

So as usual, Sheila snapped to attention to solve the problem. It was 2016 – surely modern medicine could fix this. (NPR is not using Devyn’s or sheila’s last name to protect Devyn’s privacy as a minor discussion on medical treatment.)

They started by calling Devyn’s surgeon, but the surgeon had no explanation for the pain. He renewed Devyn’s prescription for Percocet, and wrote a new prescription for Tramadol. But the pain only got worse, so they lined up more appointments: their pediatrician, a naturopath, a pain specialist, a sports medicine doctor.

Every doctor’s visit was the same. The doctor would ask Devyn about her pain: where was it, and what was her pain number on a scale from one to ten? Then the doctor would order some tests to find the pain’s cause.

But no matter where the doctors looked in Devyn, all they saw was a perfectly normal body.

“You are healthy – nothing is wrong. ” Those are the words the doctors said to Devyn and Sheila over and over again. It made no sense. And it felt, paradoxically, like the more they gave to the pain, the bigger the pain grew.

“It spreads from my knee down to my entire foot, the whole bottom half of my leg, to my right leg, to my right arm. My entire arm, to my shoulder, to my left hand and then my whole left arm … “says Devyn. “Pain just took over. Sometimes I couldn’t wear pants, I couldn’t wear socks, I couldn’t have the covers on my leg. my leg. “

“I was constantly thinking …” How’s my back feeling? How is my other leg feeling? feeling? And how am I going to trade it, if it spreads further? ” Devyn says:

Devyn withdrew from her public school because there were days when her body so badly she could hardly leave her room. In fact, Devyn stopped going to short social events with family and friends, because if someone tried to shake hands, her pain would be flare and she’d feel like going home. [Eventuallytheirlivesbecamesounrecognizablethattheyactuallystartedtoquestiontheirsanity

“I remember one time when we were sitting in the doctor’s office and they basically just said to Devyn,” You know you need to work really hard on your psychology ‘… and I thought, maybe we’re both crazy! ” Sheila says

But here’s the thing: they are the only ones who were facing this problem.

There are lots of teens like Devyn.

Stuck on the wrong setting [19659005] According to estimates from pain specialists, there are thousands of teenagers suffering from mysterious pain that grows and grows, jumping at random from one part of their body to the next. It mostly affects girls, though a small number of cases are in boys. In fact about ten years ago, doctors began to use a new term for the problem – amplified pain

The term acts as a child or umbrella for a variety of diagnoses (equally complex regional pain syndrome), none of which are yet well understood, particularly in children. What is clear is that most of these kids, the pain can not be fully explained by an injury or infection – for some kids, their pain seems to emerge after an injury, but it continues and grows long after the injury is healed. And doctors who treat it the pain comes from an overly sensitized nervous system.

The normal purpose of pain is to act as a warning sign – it tells you to take your hand off the stove. But the doctors who treat children like Devyn think something has happened to these kids’ brains and nervous systems go haywire and start seeing threats everywhere. For these children, it could be that even normal stimuli – like the breeze from a fan – is amplified and interpreted by the brain as an attack. That could be why Devyn field pain even though no test saw any problem. Her brain was stuck on the wrong setting and couldn’t stop paying attention to the signals it was receiving.

For pain, the go-to move in American medicine has been prescribing painkillers – but that doesn’t usually solve the problem these children have. Now a small group of doctors around the country developed an unusual approach that they say is working for some patients.

It doesn’t work for everyone, and the research has a long way to go to prove it’s effective – but it offers an intriguing alternative treatment, and it starts from a different way of thinking about pain. ] Put them in pain to get better

Dr. David Sherry, a pediatric rheumatologist at the Children’s Hospital of Philadelphia, has gray hair long enough to gather in a ponytail, a massive number of aggressively playful ties, and a very unconventional, somewhat alarming attitude towards pain.

you think about and approach pain is a critical part of the physical sensation you experience. And he believes that since the 1990s, our society has focused too much on aggressively relieving pain.

Sherry says pain is used as a normal and predictable part of life. He thinks that way American medicine now routinely asks patients to pain their pain on a scale of one to ten, and treats it like an emergency, has led to more pain in our society: more doctors confronted with kids like Devyn; more adults complaining of chronic pain. He thinks the more attention is paid to something, the bigger it becomes – because the very act of paying attention to something reinforced in the brain.

So to help kids like Devyn, Sherry, and a handful of other doctors with this approach, because to teach them to stop paying so much attention to pain. Which is why Sherry has an unusual treatment for these kids: “Put them in pain to get better.”

If you force the kids to push their bodies until they are in tons of pain, over time their brains can learn to ignore it, according to Sherry’s hypothesis. He has a clinic at the Children’s Hospital of Philadelphia where he treats around six kids with amplified pain at a time. He’s tracked his patients and claims he’s seen a lot of success; he published a small study showing that 45 out of 49 patients had remained symptom free for two years. His approach hasn’t been validated by larger, controlled trials, and in fact, a portion of patients don’t do;

But many families with these problems have tried and failed at other treatment options. Sherry’s approach seems worth trying

From dancer to ‘sick girl’

About eight months after Devyn had woken writhing in pain, she and Sheila still had no solution to Devyn’s problem. They’d tried physical therapy, medications, even hypnosis. Devyn might have amplified pain. She remembers coming home from the doctor and getting her computer to research this syndrome she had never heard of.

One patient swims in the pool during therapy. Because of the amplified pain, she was not able to unclench her right hand.



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One patient swims in the pool during therapy. Cara Tallo / NPR Because of amplified pain, she was not able to unclench her right hand.

Cara Tallo / NPR

“The very first video I clicked on, it was a girl, probably around my age, and she could not function at all,” Devyn says. “She had cabinets full of prescription medication and there was one part where she was outside and she was in a wheelchair and a mosquito bit here and she had just got stabbed in the leg. That’s how severe her pain was.” 19659005] Devyn eventually found an online support group of girls like her with chronic pain, and she found incredible solace in a community of people facing the same set of problems. As the months wore on she says she spent more and more time online talking to them.

For her part Sheila was happy to have a diagnosis, and therefore that Devyn was finding comfort in a new community. But sometimes, in a dark corner of her mind, she privately worried that her daughter was being built around being sick.

“You know she’s gone from dancer to performer to sick girl … because right now all her friends are Kids with chronic pain, “Sheila says.

What sheila wanted was a laser focus on getting rid of the pain and back to normal life. And that’s when she found out about David Sherry and his program

So they were at Philadelphia to meet him, and after a tour of his clinic they became convinced they should try this approach.

“He’s definitely a little crazy , but anyone who goes into a profession treating this disease has to be a little crazy and out of the box, “says Devyn.

Because of scheduling, Devyn wasn’t able to go to Sherry’s program at CHOP, but she got in a similar program run by one of his former rheumatology students, Dr. Cara Hoffart at the Children’s Mercy Hospital in Kansas City, Mo.

‘Easy, medium, hard’ When Devyn and Sheila sat down for intake with Dr. Emily Fox – One of the Doctors at Children’s Mercy Rehabilitation for Amplified Pain Syndromes Program – she was clear right from the start: They were going to put Devyn as much pain as they possibly could.

” hardest things that you do physically in your life, “she warned Devyn.

Devyn was going to do physical workouts five to six hours a day, so it was absolutely going to hurt. But Fox explained they were going to studyly avoid talking about the hurt because, “the focus is not on the program – therapists are going to ask you” Are things easy medium or hard? “

Easy, medium, hard. This among neutral language was necessary because of the treatment away from pain from pain . So Devyn, her mother, and even the physical therapists charged with putting Devyn in pain, should avoid speaking the word ‘pain’ when they could.

In addition pain medication – even medication for apparently unrelated problems, like nausea, shouldn’t be used. Devyn had to experience it straight up.

Fox looked at Devyn and Sheila with eyes that were serious and sympathetic but firm. If Devyn followed these rules, nine hours a day, five days a week, for three to six weeks, she said, Devyn’s pain would ease.

A focus on function

There are other programs around the country that share some of the same principles with Sherry’s and Hoffart’s approach. Often called intensive interdisciplinary pain treatment programs, they treat chronic pain with a mix of therapies, especially physical therapy and psychotherapy.

They’re all intended to help patients learn to cope better with pain and re-engage with the activities that are meaningful to them. The approach has been shown to be effective for some chronic pain complaints among adults and has shown some positive results for children with pain syndromes in small studies.

One similar program at Boston Children’s Hospital is run by Dr. Christine Greco, a pediatric pain specialist, and Dr. Deirdre Logan, a psychologist. They also treat kids with chronic pain, using a combination of therapies, including intensive physical therapy, which is typically painful for patients. But they say causing kids to experience pain is not the focus.

“Really the focus is on getting kids functional again,” says Greco. They measure success, not in terms of less pain, but in terms of kids getting back to activities they want to do.

Before the patients started in the program, they make sure they don’t have an underlying injury that could be worsened by treatment. Then, Logan says, they get ready for the pain their child is about to suffer, explaining that there is a difference between hurt and harm. “

” “But it is no longer a signal of ongoing tissue damage,” says Logan.

Sherry and Hoffart agree that restoring function is the top priority, but the intensity of their programs and restrictions on pain medications can make the treatment feel even more

Day after day

Days at the Children’s Mercy pain program begin at 7:30 am with an hour of exercise in the hospital pool. One day during Devyn’s treatment, the physical therapist led by Devyn and two other girls through a routine.

The air in the pool room was hot, making the girls excruciatingly uncomfortable. Because of their amplified pain, the girls’ skin is so sensitive that even a cool breeze can feel like someone was holding to their body.

At the Children’s Mercy Amplified Pain Syndrome Program, patients start most days with an hour of intense therapy in a 96-degree pool.



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At the Children’s Mercy Amplified Pain Syndrome Program, patients start most days with an hour of intense therapy in a 96-degree pool.

Cara Tallo / NPR

After some laps, the physical therapist brought out a stopwatch and told them to get out of the pool and jump back in as fast as they could.

So that is what they did. They jumped into the pool, then turned back to the edge and pulled the full weight of their body up to their arms. Then they did it again and again.

It went on for five minutes, each of the girls struggling to do the task over and over. One of the girls had lost the use of one side of her body – which sometimes happens with amplified pain – so it was especially hard for her. She was mostly using her arm, but still trying to throw her over the edge of the pool to help, only it kept on slipping

After swimming, Devyn moved into a full day of exercise. Her first activity was to perform a series of jumps with her arms stretched overhead

Devyn started fine but about 30 seconds in, began to have an asthma attack. Her breathing got more and more labored, until she was gasping, struggling to get the air she needed.

She was the physical therapist that she probably should get her inhaler, but since inhalers are medicine, the therapist directed Devyn to simply walk. around the gym and calm down.

Later, when Devyn got a nosebleed, the therapist signaled her to continue with her workout. Again she did not want Devyn to linger over the problem, to give more attention to pain

So Devyn did push on.

Boring the brain

As far as Hoffart is concerned, there are very few other pain programs in the United States. besides Children’s Mercy that refuse to bridge pain with medications. But, here is the meds of sabotaging in cases of amplified pain.

In the amplified pain treatment program at Children’s Mercy, patients spend hours a day doing uncomfortable exercises with the idea that they can gradually retrain their nervous system to be less sensitive to pain.



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In the amplified pain treatment program at Children’s Mercy, patients spend hours a day doing uncomfortable exercises with the idea that they can retrain their nervous system to less sensitive to pain.

Cara Tallo / NPR

“I am asking a teenager to do an incredibly complex, challenging, hard treatment approach and most of my patients will tell you this is their last resort,” she says. “And if they are still holding out that maybe some medication is going to save them or fix this? It’s really hard to give your all to something that sounds so hard and challenging. And so you kind of have to be all in.” 19659005] In a sense, what the program is trying to do, Hoffart says, is to slowly, laboriously retrain the brain. That’s why the children have to be so painful for so long. Because of their past behaviors, Hoffart says, she thinks their brains have been trained in the wrong way.

She gives the example of walking, which for these kids can actually be a painful activity.

“Your nerves just heard from you walking is dangerous because you stopped. So next time you start walking they’ll remember that … you just empowered them to send more pain signals,” she says.

“If you are walking your nerves are essentially getting the message of,” Well she’s still walking [so] this must not be dangerous. ? ‘ and then, if I tell my kids, they’ll get bored and stop firing, “she says.

So that’s what they’re trying to do: Bore the brain into submission. That’s why they avoid the word pain. When a kid is asked about their pain, Hoffart says one way to think about what happens is that the brain must take an inventory – run through the body checking — and that refreshes all the nerve connections. Again, she speculates, that is the problem with paying too much attention to something.

But boring the brain is a big job, so they can’t just work with the kids. They need the whole world around the kid to change too.

Enabling or supporting

Dustin Wallace, the program’s lead psychologist has a very clear message for the parents: Once they go home, avoid the topic of pain , with their kids absolutely, but even with their adult friends and family outside their home. He is based on his belief that attention moves through networks of people, infecting everyone, and changing how they act.

“The people that are in your lives are often in your kids’ lives. They’re parents of your kids “Friends, they’re your kids’ relatives, they’re your town or network. And so you don’t want to see your kid through this lens, because it will color their behavior,” Wallace explains.

Sheila takes Wallace’s words to heart when it comes to Devyn: “I think as a parent you always teeter on the edge of ‘I am enabling’ or” I am supporting? ” “she says.

But while the program is premised on the idea that there are problems associated with the increasing amount of attention our society pays to pain, the answer, Wallace says, not to reinstate the pure bear it approach of decades ago before pain became more widely treated.

Wallace believes that when you are unable to name and think about your emotions, and don’t have the tools to diffuse them, whatever stress you experience is directed at and absorbed by the body. That’s an important part of the problem with these girls, Wallace says: They’re not in touch with their feelings; they just plaster on what the program calls an “I’m fine”

So, Wallace says, one way to understand what’s happening to them is that their nervous systems go haywire because they don’t have the sophisticated emotional skills they need to manage in an increasingly stressful world.

“What the world expects today of everybody, but in particular coming down to our kids is so much greater, so much faster, so much more all-day-long, that they are facing far more stress, more hours of the day, “he says.

So in the treatment, when the kids are going through their exercises, before and after the activities, their trainers ask them for a word that describes how they are feeling. They also complete worksheets and diary entries so they can learn to better articulate their inner thoughts. They are taught breathing exercises and the program gives the patients both individual and group therapy

At the Children’s Mercy amplified pain program, patients track their progress on a board. When their physical therapist determines that they have complete activity to their full potential, they put a “maxed” label on the board as a celebration of their accomplishment.



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At the Children’s Mercy amplified pain program, patients track their progress on a board. When their physical therapist determines that they have complete activity to their full potential, they put a “maxed” label on the board as a celebration of their accomplishment.

Cara Tallo / NPR

Wallace says kids should have the ability to explore and manage the thoughts and emotions that they need to struggle with, but should also know when – especially in the case of pain – it’s going to serve them better to release those feelings and move on.

Graduation

After three weeks of treatment, it was the last day for Devyn and everyone gathered in the gym so Fox could hand her a certificate of completion.

Just before she left, Fox asked Devyn her official pain score so she could have made the closing number on her chart – and Devyn answered “6”. In other words, Devyn was still a lot of pain

But that was apparently normal. Fox duty Devyn that she kept up all her exercises, and kept on pushing through, the pain should dramatically diminish within a year. So that was Devyn’s and Sheila’s goodbye and loaded into the car to drive away.

And about a month after the program ended, Devyn reported her pain had gone down. Devyn says that some days it’s at a zero. Not every day, but sometimes.

For both Devyn and Sheila it was an incredible relief. Devyn just went back to dancing

This story is adapted from Invisibilia Season Five, Episode 1. Leena Sanzgiri and Carmel Wroth provided additional reporting for the web version of this piece.

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