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While bedridden with Lyme, Kelly Weintraub set the goal of hiking the 2,650-mile Pacific Crest Trail. Could this wildlife biologist claw back her health?

Previously on Painopolis, wildlife biologist Kelly Weintraub talked about the years of symptoms that mysteriously would come and go. Fatigue. Muscle cramps. Migrating pain. Brain fog. Finally, a chance encounter with a colleague whose wife had long confronted the same symptoms led Weintraub to figure out what she was battling: Lyme disease. Lyme is a bacterial infection primarily spread by ticks. But ticks can transmit lots of other diseases, too, which can trigger disabling consequences. As Weintraub, unfortunately, found out.

“Six months after finishing her antibiotics treatment, Weintraub hit the Pacific Crest Trail. Would the little bloodsuckers she’d encounter in the wilderness zap her with even more tick-borne infections?”

Ten months into a controversial antibiotics regimen, she found out she had two more nasty tick-borne infections—anaplasmosis and bartonellosis. That’s why she was still sick, despite taking antibiotics for so long. Some experts say as many as 50 percent of Lyme sufferers like Weintraub—the ones who weren’t treated within 30 days after being infected—stay sick long-term.

But Weintraub beat those odds. In a big way.

While bedridden, she set the pie-in-the-sky goal to hike the Pacific Crest Trail from Mexico to Canada. Six months after finishing her antibiotics treatment, Weintraub hit the trail. Would she be able to walk 2,650 miles with a heavy pack on her back? Would the little bloodsuckers she’d encounter in the wilderness zap her with even more tick-borne infections? In this episode, Weintraub gives us a detailed map of how she went from the sick bay to the summit of her life.

Today, in part two of the story, Weintraub talks about:

• Her strategy for never missing a dose of her meds when her daily pills filled six pillboxes

• The mental shifts she made to deal with the roller-coaster nature of Lyme disease

• Why she believes that setting big goals for herself when she was super-sick was a key part of her recovery. (While bedridden, she decided to hike the Pacific Crest Trail!)

• What it was like to hike 20 miles a day so soon after being sick

• How to increase the odds of finding a tick on your body when you’re searching for something that can be as small as a poppy seed

• Why she keeps returning to the wilderness—for work and recreation—despite the abundance of disease-carrying ticks lurking there

Interviewee:

Kelly Weintraub is a wildlife biologist, Lyme disease survivor, and Pacific Crest Trail thru-hiker. In her blog, Life Beyond Lyme: From Lyme Disease to the Pacific Crest Trail, she documents the journey she made from getting her life-changing Lyme diagnosis to triumphantly completing the Pacific Crest Trail.

Weintraub says these three books got her up to speed on Lyme disease and tick-borne infections:

• How Can I Get Better? An Action Plan for Treating Resistant Lyme & Chronic Disease by Richard I. Horowitz, M.D. The doctor’s 55-question Horowitz Lyme-MSIDS Questionnaire illustrates how varied common Lyme disease and tick-borne coinfection symptoms can be.

• Cure Unknown: Inside the Lyme Epidemic by Pamela Weintraub (no relation to Kelly)

• The Beginner’s Guide to Lyme Disease: Diagnosis and Treatment Made Simple by Nicola McFadzean, N.D.

Resources:

• International Lyme and Associated Diseases Society

• Bay Area Lyme Foundation

• LymeDisease.org

• Centers for Disease Control and Prevention’s pages on Lyme Disease includes this comprehensive, 52-page PDF, “Tickborne Diseases of the United States: A Reference Manual for Health Care Providers,” and this scary chart (click on the “Tables and Charts” button) that shows the steady climb in annual reported cases of Lyme disease since 1996. More than 476,000 people get diagnosed with Lyme disease each year in the U.S.

• TickEncounter Resource Center at the University of Rhode Island. Leave it to a patent-holding, research-paper-publishing scientist who calls himself “The TickGuy” to come up with some easy-to-use yet fabulously detailed tools to help folks living in or heading into tick-infested lands. Dr. Thomas Mather is the ace researcher and science communicator behind the center. Take his crowd-sourced tick survey, TickSpotters. If you’re freaking out because you just removed an engorged tick from your nether regions while camping out, you can tap TickSpotters to get a jump on how worried you should be. Drop the little bloodsucker on a piece of white paper, snap a photo and upload it to the TickSpotters team. They will email you a risk-assessment report that identifies the species of tick you found, its stage of development, how long it probably was attached to you, how at risk you are for disease and what your next actions should be to sidestep illness. If you’re more of a DIY person, use the center’s Field Guide to Ticks. It helps your inner entomologist figure out which tick you’ve encountered; whether it’s harmless or capable of transmitting a disease to you; and whether you should consider tick testing if it’s bitten you. Just know this: the extreme close-ups of each tick species in larva, nymph and adult stages will make your skin crawl.

How to remove a tick:

In this minutelong animation, you’ll learn how to properly remove a tick that’s feeding on you to lessen your risk of infection:

https://www.youtube.com/watch?v=0wotB38WrRY

Straight from the lab:

The risk factors for getting bitten by a tick. The best diagnostic tests. The treatments that work. Heck, even just the existence and the name of the disease (chronic Lyme disease vs. post-treatment Lyme disease syndrome, for example). There’s a lack of consensus on those things and so many other pieces of the Lyme puzzle among doctors who treat patients with Lyme disease and tick-borne coinfections. Here are some articles that explore the leading controversies:

• “Recent Progress in Lyme Disease and Remaining Challenges,” Frontiers in Medicine, 2021

• “Risk Factors for Bites and Diseases Associated With Blacklegged Ticks: A Meta-Analysis,” American Journal of Epidemiology, 2019.

• “Controversies About Lyme Disease,” JAMA, 2018

• “Diagnosis of a Tick-Borne Coinfection in a Patient With Persistent Symptoms Following Treatment for Lyme disease,” BMJ Case Reports, 2018

• “Using Citizen Science to Describe the Prevalence and Distribution of Tick Bite and Exposure to Tick-Borne Diseases in the United States,” PLOS ONE, 2018

• “Better Drugs for Lyme Disease: Focus on the Spirochete,” Infection and Drug Resistance, 2018

• “Empirical Validation of the Horowitz Multiple Systemic Infectious Disease Syndrome Questionnaire for Suspected Lyme Disease,” International Journal of General Medicine, 2017

• “Severity of Chronic Lyme Disease Compared to Other Chronic Conditions: A Quality of Life Survey,” PeerJ, 2014

Explore the show notes for this episode at: https://painopolis.com/lyme-disease-and-tick-borne-infections-part-2/

Music:

Our theme music is “Gentle Storm,” composed and performed by Betsy Tinney (betsytinney.com).

Did you find this episode worth hearing? If so, kindly donate to Painopolis.

Our toolbox:

Check out the following sponsored services we use and love.

Please support Painopolis:

Did you find this episode worth hearing? If so, kindly donate to Painopolis.

We appreciate it! Your donation allows us to keep bringing you great stories, strategies, and insights.

_____________________

The most dangerous creature Kelly Weintraub ever came across was as small as a poppy seed. But its bite infected her with a ticking time bomb of chronic ailments.

Nine years ago, avid outdoorswoman Kelly Weintraub found herself in a scary and unfamiliar place: a wheelchair. A wildlife biologist, Weintraub thought she was having a stroke. So she went to the ER, where the doctors told her she was fine. But Weintraub knew she wasn’t. Something was making her sick.

“A chance encounter with a colleague whose wife had long confronted the same symptoms led Weintraub to figure out what she was battling: Lyme disease. But that wasn’t the half of it.”

This was just the latest calamity in a series of health ordeals that had forced Weintraub to go on medical leave. She’d suffered for years from symptoms that mysteriously would come and go. Fatigue. Muscle cramps. Migrating pain. Brain fog. A month after the ER visit, a chance encounter with a colleague whose wife had long confronted the same symptoms led Weintraub to figure out what she was battling: Lyme disease. But that wasn’t the half of it.

Known as The Great Imitator, Lyme disease mimics other conditions such as multiple sclerosis and fibromyalgia. Lyme is a bacterial infection primarily spread by ticks. But ticks can transmit lots of other diseases, too. There’s Rocky Mountain spotted fever. The Heartland virus. Tick-borne relapsing fever. These, and many others, can trigger disabling consequences. What’s more, new tick-borne diseases are being discovered all the time.

If you think you’re out of the woods because you live far from Tick Central—the Northeast states of the U.S.—circle back to the names of the tick-borne diseases I just listed. Yep, the West and Midwest are flush with ticks, too. In fact, in some places, your risk of getting some of these other tick-borne diseases is greater than getting Lyme disease, which is found throughout the U.S. and in more than 60 other countries. (Indeed, Weintraub lives on the West Coast.) Living in a leafy suburb—or hiking in the woods—can potentially jeapordize your health these days.

Even if a tick makes you sick, good luck trying to get an accurate diagnosis. Why? For starters, tick saliva has an anesthetizing substance in it. Less than half of people bitten by a tick recall the event. (Weintraub doesn’t). Plus, the bite is supposed to give you a distinctive red “bull’s-eye” rash. That’s bullshit. Seeing a bull’s-eye rash is typically the symptom that prompts doctors to start patients on a two-or-three-week course of antibiotics to prevent Lyme disease. But the rash doesn’t always appear. (It didn’t in Weintraub’s case.) Finally, the lab tests that are most commonly used to diagnose Lyme are unreliable. They miss more than half of all cases.

For Weintraub, the diagnoses kept coming. Ten months into a controversial antibiotics regimen, she found out she had two more nasty tick-borne infections—anaplasmosis and bartonellosis. That’s why she was still sick, despite taking antibiotics for so long. Some experts say as many as 50 percent of Lyme sufferers like Weintraub—the ones who weren’t treated within 30 days after being infected—stay sick long-term.

But Weintraub wanted to beat those odds. In a big way.

And so, while she was bedridden, she ruminated on what “being well” meant for her. Eventually she came up with only one thing: hiking the 2,650-mile Pacific Crest Trail from Mexico to Canada. Her quest set, she spent hours online reading PCT hikers’ trail journals. Their posts made her feel as if she was laced into her own hiking boots and walking through the wilderness, instead of where she really was. Flat on her back. In her parents’ spare bedroom.

In this episode, Weintraub gives us a detailed map of how she went from the active life to the sick bay.

Today, Weintraub talks about:

• Why she had no inkling that a ticking time bomb of tick-borne diseases was lurking inside her for years before she got sick

• How she finally found out she had Lyme disease

• The dietary restrictions she adopted to increase her odds of getting better

• Why she resorted to the controversial treatment of taking antibiotics for 2 1/2 years

• How her doctor figured out she had bartonellosis despite her testing negative for it—and which treatment nuked it

• How she ramped down her worklife to accommodate her healing and how she eased back into full employment

• Why, while bedridden, she decided to hike the 2,650-mile Pacific Crest Trail

• How she paid for treatment that cost tens of thousands of dollars out of pocket

Interviewee:

Kelly Weintraub is a wildlife biologist, Lyme disease survivor, and Pacific Crest Trail thru-hiker. In her blog, Life Beyond Lyme: From Lyme Disease to the Pacific Crest Trail, she documents the journey she made from getting her life-changing Lyme diagnosis to triumphantly completing the Pacific Crest Trail.

Weintraub says these three books got her up to speed on Lyme disease and tick-borne infections:

• How Can I Get Better? An Action Plan for Treating Resistant Lyme & Chronic Disease by Richard I. Horowitz, M.D. The doctor’s 55-question Horowitz Lyme-MSIDS Questionnaire illustrates how varied common Lyme disease and tick-borne coinfection symptoms can be.

• Cure Unknown: Inside the Lyme Epidemic by Pamela Weintraub (no relation to Kelly)

• The Beginner’s Guide to Lyme Disease: Diagnosis and Treatment Made Simple by Nicola McFadzean, N.D.

Resources:

• International Lyme and Associated Diseases Society

• Bay Area Lyme Foundation

• LymeDisease.org

• Centers for Disease Control and Prevention’s pages on Lyme Disease includes this comprehensive, 52-page PDF, “Tickborne Diseases of the United States: A Reference Manual for Health Care Providers,” and this scary chart (click on the “Tables and Charts” button) that shows the steady climb in annual reported cases of Lyme disease since 1996. More than 476,000 people get diagnosed with Lyme disease each year in the U.S.

• TickEncounter Resource Center at the University of Rhode Island. Leave it to a patent-holding, research-paper-publishing scientist who calls himself “The TickGuy” to come up with some easy-to-use yet fabulously detailed tools to help folks living in or heading into tick-infested lands. Dr. Thomas Mather is the ace researcher and science communicator behind the center. Take his crowd-sourced tick survey, TickSpotters. If you’re freaking out because you just removed an engorged tick from your nether regions while camping out, you can tap TickSpotters to get a jump on how worried you should be. Drop the little bloodsucker on a piece of white paper, snap a photo and upload it to the TickSpotters team. They will email you a risk-assessment report that identifies the species of tick you found, its stage of development, how long it probably was attached to you, how at risk you are for disease and what your next actions should be to sidestep illness. If you’re more of a DIY person, use the center’s Field Guide to Ticks. It helps your inner entomologist figure out which tick you’ve encountered; whether it’s harmless or capable of transmitting a disease to you; and whether you should consider tick testing if it’s bitten you. Just know this: the extreme close-ups of each tick species in larva, nymph and adult stages will make your skin crawl.

How to remove a tick:

In this minutelong animation, you’ll learn how to properly remove a tick that’s feeding on you to lessen your risk of infection:

https://www.youtube.com/watch?v=0wotB38WrRY

Straight from the lab:

The risk factors for getting bitten by a tick. The best diagnostic tests. The treatments that work. Heck, even just the existence and the name of the disease (chronic Lyme disease vs. post-treatment Lyme disease syndrome, for example). There’s a lack of consensus on those things and so many other pieces of the Lyme puzzle among doctors who treat patients with Lyme disease and tick-borne coinfections. Here are some articles that explore the leading controversies:

• “Recent Progress in Lyme Disease and Remaining Challenges,” Frontiers in Medicine, 2021

• “Risk Factors for Bites and Diseases Associated With Blacklegged Ticks: A Meta-Analysis,” American Journal of Epidemiology, 2019.

• “Controversies About Lyme Disease,” JAMA, 2018

• “Diagnosis of a Tick-Borne Coinfection in a Patient With Persistent Symptoms Following Treatment for Lyme disease,” BMJ Case Reports, 2018

• “Using Citizen Science to Describe the Prevalence and Distribution of Tick Bite and Exposure to Tick-Borne Diseases in the United States,” PLOS ONE, 2018

• “Better Drugs for Lyme Disease: Focus on the Spirochete,” Infection and Drug Resistance, 2018

• “Empirical Validation of the Horowitz Multiple Systemic Infectious Disease Syndrome Questionnaire for Suspected Lyme Disease,” International Journal of General Medicine, 2017

• “Severity of Chronic Lyme Disease Compared to Other Chronic Conditions: A Quality of Life Survey,” PeerJ, 2014

Explore the show notes for this episode at: https://painopolis.com/lyme-disease-and-tick-borne-infections-part-1/

Music:

Our theme music is “Gentle Storm,” composed and performed by Betsy Tinney (betsytinney.com).

Did you find this episode worth hearing? If so, kindly donate to Painopolis.

Our toolbox:

Check out the following sponsored services we use and love.

Please support Painopolis:

Did you find this episode worth hearing? If so, kindly donate to Painopolis.

We appreciate it! Your donation allows us to keep bringing you great stories, strategies, and insights.

_____________________

After a horrific fall from a roof, Bob Jester needed opioids to get through the day. Then he found something better than pills: the pain-fighting power of VR.

In the time it takes to tumble off a roof, Bob Jester’s life took a calamitous turn. A professional chimney sweep, Jester had spent decades working at a job that involved climbing onto high, steep rooftops. Given the obvious danger, he’d always been a stickler about safety. Then one August day in 2016, he made a slight blunder, and that’s all it took. An instant later, he fell 18 feet and broke 19 bones. Surgeons used metal rods and bolts to cobble together his fractured vertebrae. But despite the repairs, he was left with partial disability and intense chronic pain that he treated with opioids.

“Laid out before him was a dreamscape of images far more dazzling than anything on TV. In fact, virtual reality is to television what television is to daguerreotypes.”

Fortunately, this chimney sweep had also worked for 39 years as a high school science teacher. So when he looked for ways to reduce his suffering, guess which method he used? The scientific method. It became Jester’s road map, and his body became his laboratory. Harnessing the same spirit of experimentation that he’d taught to his students, he hit upon a revelatory finding little known beyond the pages of obscure medical journals.

His eureka moment happened while he was wearing a virtual-reality headset, which looks like futuristic ski goggles. But it’s what Jester saw inside those goggles that made all the difference. Laid out before him was a dreamscape of images far more dazzling than anything on TV. In fact, virtual reality is to television what television is to daguerreotypes. No matter how skillful the camerawork, even the best TV documentary about dolphins still boils down to two-dimensional, miniaturized animals moving across on a flat screen. You’d never mistake it for the real thing.

Watch a similar scene through VR googles, by contrast, and you’ll suddenly be surrounded by three-dimensional, life-size dolphins swirling around you, above you, and below you. It’s as if you’re actually there with Flipper and his friends in the ocean. Virtual dolphins look so palpably real that you’ll want to reach out and hand them a virtual fish.

For Jester, the effect of VR wasn’t just entertaining. It was transfixing. Whenever he had a flare-up, he’d pop on his VR headset and suddenly find himself swimming with dolphins. Or flying with the Wright Brothers. Or petting a virtual farm animal. Or wandering the ruins of Machu Picchu. The VR imagery transported him to a world so engrossing that his pain faded into the background. Over time, by gradually substituting VR for painkillers, he actually weaned himself off opioids.

For years, pain scientists have been amassing a growing body of research data about VR. Their findings confirm that it significantly eases all sorts of acute and chronic pain, ranging from low back pain to phantom limb pain. When cancer patients use VR, chemo infusions seem to go faster. VR even reduces the almost-criminal torment endured by burn victims during wound-dressing changes. One recent study even found that virtual reality was twice as effective as morphine at lowering pain. And unlike opioids, VR spares pain patients the indignity of having to beg their doctors for a prescription.

Thus far, the best evidence of VR’s pain-relieving effect comes from studies that monitored people’s pain levels while they were wearing the goggles. But there’s also anecdotal evidence of lingering benefits even after the goggles come off. That’s certainly been the case for Jester.

Until recently, the gadgetry was so costly and cumbersome that it just wasn’t ready for prime time. But like most things high tech, VR is rapidly becoming better, smaller, and more affordable. It’s now within the price range of an average consumer.

When I recently spoke with Jester about how he’s used VR to manage his pain, that’s what I thought we’d mainly talk about. But he turned out to be the kind of science teacher we all wish we could have had. Witty. Generous. And resourceful. Because of that last trait, VR turned out to be just one item in what he calls his pain-fighting toolbox.

Which is why he and I go rummaging around to see what else he’s got stashed in there. It turns out to be an amazing trove. If you’ve come for the virtual reality, don’t worry; he and I take a deep dive into that topic. But we also explore a bunch of other strategies and resources that have helped him deal with the most grueling physical challenge of his life.

Not every item in Jester’s toolbox will necessarily work for you. But like looking through a pair of virtual-reality goggles, they’ll definitely expand your imagination and widen your vision of what’s possible.

Today, Jester talks about:

•  The mistake that caused him to fall off a roof

•  The severity of his injuries

•  How he used virtual reality to get off opioids

•  His never-fail tool for accepting his pain

•  Why he spends three to five hours a day exercising

•  Other key resources and strategies he’s relied on to help him heal

Interviewee:

Bob Jester is a retired high school science teacher, professional chimney sweep, and lifelong member of his local volunteer fire department.

Straight from the lab:

Wondering if virtual reality might help ease chronic pain? Scientists have been exploring that same question. Check out this sampling of their research to date:

•  “Virtual Reality as an Analgesic for Acute and Chronic Pain in Adults: a Systematic Review and Meta-Analysis,” Journal of Pain Research, 2019.

•  “Efficacy of Virtual Reality to Reduce Chronic Low Back Pain: Proof-of-Concept of a Nonpharmacological Approach on Pain, Quality of Life, Neuropsychological and Functional Outcome,” PLOS ONE, 2019.

•  “Virtual Reality Enhances Gait in Cerebral Palsy: A Training Dose-Response Meta-Analysis,” Frontiers in Neurology, 2019.

•  “Neuroscience of Virtual Reality: From Virtual Exposure to Embodied Medicine,” Cyberpsychology, Behavior and Social Networking, 2019.

•  “Virtual Reality Distraction During Endoscopic Urology Surgery under Spinal Anesthesia: A Randomized Controlled Trial,” Journal of Clinical Medicine, 2018.

•  “Clinical Trial of the Virtual Integration Environment to Treat Phantom Limb Pain with Upper Extremity Amputation,” Frontiers in Neurology, 2018.

•  “Immersive Low-Cost Virtual Reality Treatment for Phantom Limb Pain: Evidence from Two Cases,” Frontiers in Neurology, 2018.

•  “Assessing the Feasibility of Implementing Low-Cost Virtual Reality Therapy During Routine Burn Care,” Burns, 2018.

•  “The Impact of Virtual Reality on Chronic Pain,” PLOS ONE, 2016.

Explore the show notes for this episode at: https://painopolis.com/virtual-reality-eases-chronic-pain/

Music:

Our theme music is “Gentle Storm,” composed and performed by Betsy Tinney (betsytinney.com).

Did you find this episode worth hearing? If so, kindly donate to Painopolis.

Our toolbox:

Check out the following sponsored services we use and love.

Please support Painopolis:

Did you find this episode worth hearing? If so, kindly donate to Painopolis.

We appreciate it! Your donation allows us to keep bringing you great stories, strategies, and insights.

_____________________

Can a do-it-yourself treatment involving capsaicin—a chemical in hot peppers—stop severe facial pain? A Nashville-based singer-songwriter decided to find out.

Previously on Painopolis, we brought you the jaw-dropping story of an Australian scientist named Hugh Spencer. He’s come up with daring, do-it-yourself method for treating one of the worst types of pain imaginable: that of trigeminal neuralgia.

“After the ailment took hold, Ruggieri found himself buffeted by more than 200 excruciating jolts of pain in his face every day. It got to where he could barely talk, much less sing.”

Through trial and error, Spencer figured out a way to cure himself of this difficult-to-treat disorder, caused by a facial nerve gone rogue. His secret weapon: capsaicin, the chemical in hot peppers that produces the spicy, burning sensation when you eat them. A neurobiologist by training, Spencer argues that capsaicin can deaden the pain receptors that provoke trigeminal neuralgia while leaving other nerve fibers and healthy tissues intact. Consequently, he insists, capsaicin can relieve the suffering without causing facial numbness or other complications sometimes associated with conventional treatments.

It’s been known for decades that capsaicin applied topically to the skin can help relieve certain types of chronic pain. But Spencer added a daunting new twist: instead of smearing the oily substance on his face, he put it directly inside his mouth on the location of the pain and held it there for 20 minutes before rinsing it out. He then repeated this protocol once a day for a week. After that, his pain was gone. That was more than a dozen years ago, and it’s never come back. Not even a twinge.

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As word spread, trigeminal pain sufferers worldwide contacted Spencer to find out more about his treatment. And of the hundreds of people who’ve tried it and reported back, he says, about half of them found relief.

That got my attention. But I wanted to get an independent assessment about this approach from a trigeminal patient who’s used Spencer’s method and could tell me whether it helped.

To do that, I’d need to find somebody who’s either brave or desperate. That’s because the capsaicin recommended by Spencer is 300 times hotter than Sriracha sauce. In fact, it approaches the intensity of law-enforcement-grade pepper spray.

Well, I tracked down just such a person. His name is JP Ruggieri, and when you hear what he does for a living, you’ll understand why his need for relief was so urgent. Ruggieri is a 33-year-old Nashville-based singer, musician, and songwriter. A while back, he began suffering severe facial pain diagnosed as trigeminal neuralgia.

After the ailment took hold, he found himself buffeted by more than 200 excruciating jolts of pain in his face every day. It got to where he could barely talk, much less sing. He couldn’t even tolerate the sensation of a breeze blowing on his face. Instead of maintaining a busy performance schedule as he once had, Ruggieri spent more and more time indoors. And in agony.

He initially tried a first-line medication. But he had to stop taking it after suffering unpleasant side effects. And he wasn’t too keen on trying Option B: having surgeons cut a hole through his skull in hopes of fixing the problem mechanically. Then he heard about Spencer’s protocol. Compared to those other treatments, placing blisteringly hot capsaicin in his mouth didn’t sound so bad after all—particularly if there was any chance it could stop his pain and rescue his music career.

Today, Ruggieri joins us on the show to recount his battle with trigeminal neuralgia; describe what it’s like to put the chemical equivalent of molten lava inside his mouth; and most importantly, reveal whether the treatment actually worked. Whatever you think the answer might be, I can already assure you, you’re not even close. That’s because, this is a story where reality—and the complexities of chronic pain—prove much more unpredictable than you could possibly imagine.

Interviewee:

JP Ruggieri is a Nashville-based singer, musician, and songwriter. To learn more about him and his music, check out his website.

Hugh Spencer’s capsaicin tutorial:

Hugh Spencer, Ph.D., is the co-founder and director of the Cape Tribulation Tropical Research Station, located in Queensland, Australia. Spencer can be contacted at: hugh@austrop.org.au

In this video, Spencer demonstrates how he used capsaicin to vanquish his trigeminal neuralgia and explains the science behind capsaicin’s ability to dial down the pain:

Straight from the lab:

What’s the evidence for capsaicin’s ability to relieve trigeminal neuralgia and other types of neuropathic pain? And how effective are conventional treatments? Scientists have been asking those same questions. Explore this sampling of their research to date:

• “Fight Fire with Fire: Neurobiology of Capsaicin-Induced Analgesia for Chronic Pain,” Pharmacology & Therapeutics, 2021.

• “8% Capsaicin Patch in Treatment of Peripheral Neuropathic Pain,” Pain Physician, 2020.

•  “Topical Capsaicin (High Concentration) for Chronic Neuropathic Pain in Adults,” Cochrane Library, 2017.

•  “Trigeminal Neuralgia,” American Family Physician, 2016.

•  “Capsaicin: Current Understanding of Its Mechanisms and Therapy of Pain and Other Pre-Clinical and Clinical Uses,” Molecules, 2016.

•  “High-Dose Capsaicin for the Treatment of Neuropathic Pain: What We Know and What We Need to Know,” Pain and Therapy, 2014.

•  “Carbamazepine for Chronic Neuropathic Pain and Fibromyalgia in Adults,” Cochrane Library, 2014.

•  “Capsaicinoids in the Treatment of Neuropathic Pain: A Review,” Therapeutic Advances in Neurological Disorders, 2014.

•  “Natural History and Outcome of 200 Outpatients with Classical Trigeminal Neuralgia Treated with Carbamazepine or Oxcarbazepine in a Tertiary Centre for Neuropathic Pain,” The Journal of Headache and Pain, 2014.

•  “The Capsaicin 8% Patch for Neuropathic Pain in Clinical Practice: A Retrospective Analysis,” Pain Medicine, 2013.

•  “Non-Antiepileptic Drugs for Trigeminal Neuralgia,” Cochrane Library, 2013.

•  “Neurosurgical Interventions for the Treatment of Classical Trigeminal Neuralgia,” Cochrane Library, 2011.

•  “The Treatment of Periocular and Facial Pain with Topical Capsaicin,” Journal of Neuro-Opthalmology, 1998.

•  “Topical Application of Capsaicin for Treatment of Oral Neuropathic Pain and Trigeminal Neuralgia,” Oral Surgery, Oral Medicine, Oral Pathology, 1994.

•  “Analgesic Effect of Capsaicin in Idiopathic Trigeminal Neuralgia,” Anesthesia & Analgesia, 1992.

Explore the show notes for this episode at:

https://painopolis.com/capsaicin-versus-trigeminal-neuralgia-part-2/

Music:

Our theme music is “Gentle Storm,” composed and performed by Betsy Tinney (betsytinney.com).

Did you find this episode worth hearing? If so, kindly donate to Painopolis.

Nineteen years ago, in a distant corner of northeast Australia, a scientist named Hugh Spencer started suffering horrible attacks of pain on the left side of his head. It felt as if someone were striking him with an axe. A neurobiologist by training, Spencer—in his 50s at the time—feared that he was experiencing the first foreboding glimmers of an agonizing ailment called trigeminal neuralgia.

“Spencer’s treatment involves a chemical so ubiquitous that you probably ate it the last time you dined at a Mexican, Thai, or Indian restaurant.”

It’s a neurological disorder that happens when the trigeminal nerve—a major cranial nerve that affects facial sensations and chewing—goes haywire, often for unknown reasons. It then floods the spinal cord and brain with ferocious pain signals. Typically described as electrical or stabbing, the facial pain can be so unbearable that trigeminal neuralgia has been dubbed “the suicide disease.” And indeed, Spencer—unable to control his escalating pain with medications alone—eventually found himself nearly pushed to the brink.

If his medical ordeal weren’t challenging enough, he also had to deal with one other obstacle: geographic remoteness rivaling that of Gilligan’s Island. Spencer runs an environmental research station at Cape Tribulation. There, scientists from around the world study everything from flying foxes to invasive weed species. Located along a coastline teeming with crocodiles, pythons, and ostrichlike cassowaries, his research station is actually closer to Papua New Guinea than to any major city in Australia. In fact, his nearest neighbor is the oldest tropical rainforest on earth.

When you’re that far off the beaten track, you’re forced to be self-reliant. So Spencer got to work. And through some daunting experiments in which he cast himself in the role of guinea pig, he came up with his own treatment for trigeminal neuralgia that permanently eliminated his pain. What’s more, his treatment is low-tech. It’s low-cost. It’s do-it-yourself. And anatomically, it makes sense, though it hasn’t gone through clinical trials. Hundreds of people with trigeminal neuralgia have now tried his method, and for about half of them, says Spencer, it’s worked. And it involves no pharmaceuticals, no surgery, and—he insists—no long-term side effects.

Conventional treatments for trigeminal neuralgia can’t make that same claim. The problem with medications, aside from possible side effects, is that they may fail to prevent the pain from intensifying over time. And various surgical procedures don’t always work but can lead to scary complications. For example, microvascular decompression surgery (MVD)—a type of brain surgery—is designed to relieve the pain without harming the trigeminal nerve. But here’s the bad news: the procedure involves cutting open the skull and tinkering with what’s inside, which poses a risk of complications, including hearing loss, cerebrospinal-fluid leakage, stroke, and even death.

By contrast, other less-invasive surgical options intentionally damage the trigeminal nerve in hopes of disrupting its ability to transmit pain signals. For example, radiosurgery (a.k.a. Gamma Knife or CyberKnife) uses radiation to do it. Balloon compression rhizotomy uses pressure. Glycerol injection uses a corrosive chemical. And radiofrequency thermal lesioning uses heat.

The problem is, the trigeminal nerve doesn’t just register pain. It also allows you to feel normal facial sensations—everything from the wind on your cheek to a kiss on the lips. So by messing with that nerve, these procedures can sometimes cause troubling facial numbness. What’s more, they aren’t always successful at stopping the pain or preventing it from coming back.

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By contrast, Spencer argues that his approach poses no lasting complications. And it uses a chemical so ubiquitous that you probably ate it the last time you dined at a Mexican, Thai, or Indian restaurant. That chemical—called capsaicin—is what gives chili peppers their heat.

For years, a growing body of research has found that capsaicin—when applied topically—can ease certain types of pain, including difficult-to-treat neuropathic pain. But nobody’s used it in the daring way that Spencer advocates for treating trigeminal neuralgia. For starters, he didn’t put the capsaicin on his skin. He put it inside his mouth.

And Spencer didn’t get his first batch of capsaicin from a tangy little jalapeño pepper. He got it from an old canister of pepper spray, like the kind police officers use. Just imagine the burn you’d feel by holding a spoonful of Sriracha sauce in your mouth for 20 minutes. Now multiply that heat by a factor of 300, and you’ll have some inkling of what Spencer’s fiery treatment involves.

But what does superintense spiciness have to do with relieving nerve pain? In this episode, we’ll find that out from the innovator himself.

Today, Spencer talks about:

•  His desperate battle with trigeminal pain

•  Why he refused to consider surgery

•  His trial-and-error search for a noninvasive remedy

•  The unlikely technique that quickly vanquished his suffering

•  The science behind why capsaicin appears uniquely able to reduce facial pain without hindering normal facial sensations

•  The reason capsaicin works for some patients but not others

•  Why he believes that his approach has important advantages as a first-line treatment over more invasive alternatives.

Interviewee:

Hugh Spencer, Ph.D., is the co-founder and director of the Cape Tribulation Tropical Research Station, located in Queensland, Australia.

Hugh Spencer’s Capsaicin Tutorial:

In this video, Hugh Spencer demonstrates how he used capsaicin to vanquish his trigeminal neuralgia and explains the science behind capsaicin’s ability to dial down the pain:

Straight from the Lab:

What’s the evidence for capsaicin’s ability to relieve trigeminal neuralgia and other types of neuropathic pain? And how effective are conventional treatments? Scientists have been asking those same questions. Explore this sampling of their research to date:

• “Fight Fire with Fire: Neurobiology of Capsaicin-Induced Analgesia for Chronic Pain,” Pharmacology & Therapeutics, 2021.

• “8% Capsaicin Patch in Treatment of Peripheral Neuropathic Pain,” Pain Physician, 2020.

• “Capsaicin 8% Patch in Trigeminal Neuralgia: Case Reports,” Australasian Medical Journal, 2019.

•  “Topical Capsaicin (High Concentration) for Chronic Neuropathic Pain in Adults,” Cochrane Library, 2017.

•  “Trigeminal Neuralgia,” American Family Physician, 2016.

•  “Capsaicin: Current Understanding of Its Mechanisms and Therapy of Pain and Other Pre-Clinical and Clinical Uses,” Molecules, 2016.

•  “High-Dose Capsaicin for the Treatment of Neuropathic Pain: What We Know and What We Need to Know,” Pain and Therapy, 2014.

•  “Carbamazepine for Chronic Neuropathic Pain and Fibromyalgia in Adults,” Cochrane Library, 2014.

•  “Capsaicinoids in the Treatment of Neuropathic Pain: A Review,” Therapeutic Advances in Neurological Disorders, 2014.

•  “Natural History and Outcome of 200 Outpatients with Classical Trigeminal Neuralgia Treated with Carbamazepine or Oxcarbazepine in a Tertiary Centre for Neuropathic Pain,” The Journal of Headache and Pain, 2014.

•  “The Capsaicin 8% Patch for Neuropathic Pain in Clinical Practice: A Retrospective Analysis,” Pain Medicine, 2013.

•  “Non-Antiepileptic Drugs for Trigeminal Neuralgia,” Cochrane Library, 2013.

•  “Neurosurgical Interventions for the Treatment of Classical Trigeminal Neuralgia,” Cochrane Library, 2011.

•  “The Treatment of Periocular and Facial Pain with Topical Capsaicin,” Journal of Neuro-Opthalmology, 1998.

•  “Topical Application of Capsaicin for Treatment of Oral Neuropathic Pain and Trigeminal Neuralgia,” Oral Surgery, Oral Medicine, Oral Pathology, 1994.

•  “Analgesic Effect of Capsaicin in Idiopathic Trigeminal Neuralgia,” Anesthesia & Analgesia, 1992.

Explore the show notes for this episode at:

https://painopolis.com/capsaicin-versus-trigeminal-neuralgia/

On the next episode:

As intriguing as Spencer’s approach is, I wanted to get an independent assessment of it from a trigeminal patient who’s tried Spencer’s method and could tell me whether it helped. I found the perfect person: JP Ruggieri. He’s a Nashville-based singer-songwriter who developed trigeminal neuralgia a while back. And it was brutal. He found himself buffeted by more than 200 excruciating jolts of pain in his face every day. It got to where he could barely talk, much less sing. Then he heard about Spencer’s protocol and figured, why not? So did it work? To find out, tune in next time.

Music:

Our theme music is “Gentle Storm,” composed and performed by Betsy Tinney (betsytinney.com).

Bonus:

Can’t sleep because of chronic pain? (And wondering if weed might help?) Get our new book, Cannabis Lullaby: A Painsomniac’s Quest for a Good Night’s Sleep. Available in print, ebook, and audiobook, it’s brimming with real-world, evidence-based answers. The author is Painopolis co-host David Sharp, an award-winning health journalist who nipped his pain-fueled insomnia in the bud. Buy a copy today at: painopolis.com/cannabis-lullaby/

Our toolbox:

Check out the following sponsored services we use and love.

Please support Painopolis:

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We appreciate it! Your donation allows us to keep bringing you great stories, strategies, and insights.

Previously on Painopolis, gunshot survivor Jeff Droke described the day in 2003 when a gunman ambushed him at home. Droke was shot eight times in the head, neck and chest. Despite life-threatening injuries, the 44-year-old accountant and professional wrestler tussled with his attacker. Droke ended up throttling the guy so badly that the gunman was forced to flee.

“Just three weeks after the shooting, he was back at the gym working out. But his severe pain didn’t go away; it only went dormant.”

But Droke wasn’t out of danger. While waiting for an ambulance, he nearly bled to death on his neighbor’s lawn. He also had an unforgettable near-death experience. And at the hospital, doctors were amazed that the bullets hadn’t killed him outright.

In the weeks that followed, doctors would be surprised again by Droke’s speedy recovery. Just three weeks after the shooting, he was back at the gym working out. But as he would eventually discover, his gunshot-related pain didn’t go away; it only went dormant. Meanwhile, the police arrested two men and charged them with attempted first-degree murder for the attack on Droke.

Today, Droke talks about:

•  The strange and unexpected way that severe pain came roaring back 11 years after the shooting

•  How he ultimately brought that pain under control

•  What other gunshot-related medical complications cropped up

•  What happened to the culprits involved in the attack

•  How the local justice system bungled any chance he had of getting the justice he’d hoped for

•  Why a gunshot-survivors support group is probably the safest place in town—unless you’re a bad guy

Interviewee:

Jeff Droke is an accountant, gunshot survivor, and gunshot-survivor advocate.

Resources:

•  Droke created shotmemphis.org to serve as an internet resource for Memphis-area survivors of gun violence.

•  Droke’s website was inspired by shotproject.org, another website that addresses the tragedy of gun violence (caution: it contains graphic images of gunshot injuries).

Straight from the lab:

Medical experts have published more than 10,000 articles on the treatment of gunshot wounds. In a sign of just how common gun violence has become, name any body part that’s ever been hit by a bullet, and you’re likely to find published papers exploring the best treatment options for it.

Explore the show notes for this episode at: https://painopolis.com/gunshot-survivor-chronic-pain-part-2/

Music:

Our theme music is “Gentle Storm,” composed and performed by Betsy Tinney (betsytinney.com).

Bonus:

Can’t sleep because of chronic pain? (And wondering if weed might help?) Get our new book, Cannabis Lullaby: A Painsomniac’s Quest for a Good Night’s Sleep. Available in print, ebook, and audiobook, it’s brimming with real-world, evidence-based answers. The author is Painopolis co-host David Sharp, an award-winning health journalist who nipped his pain-fueled insomnia in the bud. Buy a copy today at: painopolis.com/cannabis-lullaby/

Our toolbox:

Check out the following sponsored services we use and love.

Please support Painopolis:

Did you find this episode worth hearing? If so, kindly:

We appreciate it! Your donation allows us to keep bringing you great stories, strategies, and insights.

On a bitter January morning in 2003, a 19-year-old man named Billy Glenn Jackson drove a stolen rental car along a quiet residential street near Memphis, Tennessee. It was the sort of suburban neighborhood that normally seemed shielded from the crackle of gunfire plaguing other parts of the Memphis area. But Jackson had brought along a target pistol. And on this day, gun violence would be making a house call.

“For most Americans, gun violence amounts to little more than a quick item on the local news. But the victims of that violence don’t have the option of changing the channel.”

Jackson parked at the home of his intended victim: a 44-year-old accountant named Jeff Droke. Raised in Memphis, Droke moonlighted as a professional wrestler. Even in his middle years, Droke—known to local wrestling fans as “The Hammer”—still had the muscle-popping, superhero build of an athlete 20 years younger.

Jackson got out of his car, walked up to Droke’s house, and banged on the front door. Then he banged even louder. Glancing out a window, Droke saw a stranger oddly decked out in a white bubble coat and white pants. Droke felt something wasn’t quite right and slipped out the back door to investigate.

Moments later, he encountered the young man who’d come there to kill him. And on that January morning, Jackson was one trigger squeeze away from completing that task. He pointed a pistol at Droke and shot him eight times in the worst possible places: his head, neck, and chest.

What happened next was a tussle so bloody and surreal that it could have been the opening scene of a Quentin Tarantino movie. You’ll hear all about it in a bit, and I hope you’re sitting down when you do. It’s that intense.

For now, let’s just say that the outcome didn’t go quite the way Jackson had intended. The confrontation ended with the panicked gunman—his white coat stained with Droke’s blood—scrambling into the stolen car and speeding away.

He didn’t stay on the run for long, though. The police soon arrested Jackson and another man named Jason Jerden for the shooting. Droke had never heard of Billy Jackson before, but he was all too familiar with the name Jerden.

Years earlier, Droke had testified against Jerden’s then-wife—a former employee of Droke’s—in a child-custody case. After that, Droke found himself on the receiving end of some serious animosity that would eventually turn lethal. Following his arrest, Jackson told police that Jason Jerden had hired him to kill Droke in retribution for Droke’s testimony in that child-custody case. No charges were ever filed against Jerden’s wife in this matter.

Unfortunately, the danger didn’t end for Droke after his assailant fled the scene. Bleeding massively, Droke managed—just barely—to stay alive long enough to get to an emergency room. He survived that ordeal, too. But he wouldn’t escape chronic pain and other gunshot-related ailments in the years to come. In that regard, he’s got a lot of company.

Each year, nearly 90,000 Americans become the victims of gun crime. Thanks to advances in emergency medicine, more than four out of five of them pull through. That’s the good news, sort of. The bad news is, the advances in emergency medicine haven’t been matched by similar improvements in the treatment of chronic pain.

As a result, more people than ever are now surviving gunshot wounds. But more people than ever are also struggling with chronic pain caused by those wounds. For most Americans, gun violence amounts to little more than a quick item on the local news. But the victims of that violence don’t have the option of changing the channel. In many cases, their lives are forever marked by longstanding pain, other gunshot-related health complications, and staggering medical bills.

Today, we’ll explore that private struggle by delving more deeply into the story you’ve already heard a snippet of: that of the accountant-wrestler who walked out of his house and into the line of fire.

Joining us is the man at the center of this story: Jeff Droke.

Today, Droke talks about:

•  What exactly happened during that bizarre attack

•  How he got the upper hand on a pistol-wielding attacker

•  How he survived those first crucial hours after getting hit by eight bullets

•  How close he came to dying (short answer: very close)

•  How long it took him to recover from his injuries

•  How he dealt with the pain

But that’s only half the story. In our next episode, “Gunshot Wounds, Part 2: Aftermath of a Shooting,” Droke talks about the sudden upsurge in gunshot-related pain he suffered 11 years after the shooting—and what might have caused it; how he ultimately brought that pain under control; what happened to the culprits involved in the attack; how the local justice system bungled any chance he had of getting the justice he’d hoped for; and why he argues that some of the best help for gunshot survivors comes from other people who’ve been shot.

Interviewee:

Jeff Droke is an accountant, gunshot survivor, and gunshot-survivor advocate.

Resources:

•  Droke created shotmemphis.org to serve as an internet resource for Memphis-area survivors of gun violence.

•  Droke’s website was inspired by shotproject.org, another website that addresses the tragedy of gun violence (caution: it contains graphic images of gunshot injuries).

Straight from the lab:

Medical experts have published more than 10,000 articles on the treatment of gunshot wounds. In a sign of just how common gun violence has become, name any body part that’s ever been hit by a bullet, and you’re likely to find published studies exploring the best treatment options for it.

Explore the show notes for this episode at: https://painopolis.com/gunshot-survivor-chronic-pain/

Music:

Our theme music is “Gentle Storm,” composed and performed by Betsy Tinney (betsytinney.com).

Bonus:

Can’t sleep because of chronic pain? (And wondering if weed might help?) Get our new book, Cannabis Lullaby: A Painsomniac’s Quest for a Good Night’s Sleep. Available in print, ebook, and audiobook, it’s brimming with real-world, evidence-based answers. The author is Painopolis co-host David Sharp, an award-winning health journalist who nipped his pain-fueled insomnia in the bud. Buy a copy today at: painopolis.com/cannabis-lullaby/

Our toolbox:

Check out the following sponsored services we use and love.

Please support Painopolis:

Did you find this episode worth hearing? If so, kindly:

We appreciate it! Your donation allows us to keep bringing you great stories, strategies, and insights.

That’s because we bring you stories about ordinary people who’ve grappled with extraordinary pain. And now that they’re on the other side of it, they want to pass along their insights and strategies to you.

“We bring you stories about ordinary people who’ve grappled with extraordinary pain. And now that they’re on the other side of it, they want to pass along their insights and strategies to you.”

And boy, do they reveal all. How they moved from Healthy to Unwell—and back again. Their treatments. Their medical expenses. And exactly what kept them on their roads to recovery!

I mean, these life-and-death stories will have you riveted. For example:

• You’ll hear from a retired high school science teacher and longtime chimney sweep who had a life-altering brush with disaster, falling 18 feet and breaking 19 bones. You’ll see how his lifelong spirit of experimentation led to using virtual reality to ratchet down his flare-ups and get off opioids.

• We’ll tell you about a wildlife biologist whose ticking time bomb of chronic ailments was set off by a creature as small as a poppy seed. You’ll root for her as she moves from being bedridden with Lyme disease to hiking the Pacific Crest Trail!

• You’ll meet a muscle-popping Memphis accountant who wrestled professionally on weekends until a hit man ambushed him and shot him eight times in his head, neck and chest. You’ll find out how he got a grip on gunshot-related chronic pain that popped up 11 years after the shooting.

• And you’ll marvel at how a neurobiologist who lives in a remote part of Australia DIYed a cure for his unbearable facial pain caused by trigeminal neuralgia. Through trial and error, he figured out how to eliminate his torment—in just one week!

At painopolis.com, you’ll find these inspiring stories of resilience—and much, much more.

Brace yourself to be moved.

Painopolis. Relentlessly in search of what works, one defiant story at a time.

Explore the show notes for this episode at:

https://painopolis.com/painopolis-podcast-new-season-coming-soon/

Music:

Our theme music is “Gentle Storm,” composed and performed by Betsy Tinney (betsytinney.com).

Bonus:

Can’t sleep because of chronic pain? (And wondering if weed might help?) Get our new book, Cannabis Lullaby: A Painsomniac’s Quest for a Good Night’s Sleep. Available in print, ebook, and audiobook, it’s brimming with real-world, evidence-based answers. The author is Painopolis co-host David Sharp, an award-winning health journalist who nipped his pain-fueled insomnia in the bud. Buy a copy today at: painopolis.com/cannabis-lullaby/

Check out the following sponsored services we use and love.

Please support Painopolis:

Did you find this episode worth hearing? If so, kindly:

We appreciate it! Your donation allows us to keep bringing you great stories, strategies, and insights.

Different pharmacies charge different prices for the same drugs. And the money you’re throwing away can be huge! And don’t think I’m comparing the prices at a mom-and-pop pharmacy in one state with a drug store inside a Big Box retailer in another state. I’m talking about the handful of pharmacies within miles of where you live. You may be out big money every month simply because you instructed your doctor’s staff to send your prescription to one pharmacy rather than another.

“GoodRx takes away the time suck of having to touch base with seven different pharmacies to get their prices for your meds. Because who’s got the time for that? Nobody!”

You probably comparison-shop for food and household supplies like paper towels and bath tissue, but when the receptionist at your doctor’s office asks for your “preferred pharmacy,” you may automatically name the pharmacy closest to your home or office. But here’s the thing: The pharmacy that is most conveniently located to you may not be the one that sells your prescription meds at the cheapest price.

How much money could be slipping through your fingers? Well, the average American’s annual prescription drug tab is $1,370. Now if you have insurance, you may only end up paying about $185 of that. But what if your insurance company moves one of your meds onto a no-pay list? Or what if you lack health insurance and don’t realize you’re overpaying by hundreds of dollars a month? Or what if a drug manufacturer astronomically spikes the price of a prescription medication you’ve been on for years? (I’m talking about you, asthma inhaler manufacturer!)

One way to get a second opinion on whether you’re paying the lowest price for your meds is to do a little due diligence at GoodRx. This website and app collects prices and discounts from more than 60,000 U.S. pharmacies and has millions of users each month. You type in the specific medication you’d like to price and your zip code, and GoodRx’s rundown of the going rate at different pharmacies around town answers questions you didn’t even know you had. Like, is it cheaper to get your prescription filled at Costco or at the independent pharmacy down the street? Can you bring down the price of the meds if you increase the quantity of pills in the vial? What if you pay with cash? And why is GoodRx giving you a coupon that can cut your cost by 80 percent? What’s in it for them?

Today, we let you know how well GoodRx works based on three criteria:

•  Is it effective?

•  Is it easy to use?

•  Is it inexpensive?

And we wrap up the episode by revealing the Painopolis rating we give GoodRx based on its usefulness, user-friendliness and cost.

If you never again want to get stuck paying for prescription drugs that have tripled in cost in a month at your go-to pharmacy, this episode is for you.

For more information:

•  This 2017 Newsweek article explains the wacky way that prescription drugs get priced. The interviewee is a now-independent advisor who spent 15 years helping drug companies price their medications. The bottomline: Nobody pays a drug’s list price—not drug wholesalers, not insurance companies, not physicians—so why should you?

•  This 2016 Consumer Reports article reveals that drugs can cost as much as 10 times more at one pharmacy than another. And among participants in a poll the magazine conducted, when hit with price spikes on their meds, only 17 percent shopped around for a better deal. The piece also offers nine strategies for finding the best prescription drug prices.

•  A chronic asthma sufferer gets curious about why his insurance company is now paying $4,000 a year for his newly prescribed maintenance inhaler in this 2016 Undark.org article that delves into why the cost of asthma inhalers has skyrocketed during the last three decades.

Music:

Our theme music is “Gentle Storm,” composed and performed by Betsy Tinney (betsytinney.com).

Wish other people in chronic pain knew about Painopolis? To help spread the word, please post a review about Painopolis on Apple Podcasts. We’d be forever grateful.

It’s an all-too-common scenario: You’ve seen a slew of doctors who’ve prescribed countless treatments to erase your pain. Nevertheless, it persists. So what now?

“There are scientists right this minute trying to get to the bottom of whatever your medical disorder is. And they’re coming up with new experimental treatments. If you sign up for a clinical trial, you’re able to get access to experimental treatments way before you otherwise would.”

If the available treatments haven’t worked, maybe some unavailable ones might. And by unavailable, I mean treatments so new that they’re still working their way through the gauntlet of scientific testing that determines whether they’re safe and effective. Research scientists refer to those tests as clinical trials. The entire multi-stage evaluation process can take a decade or more to complete. In the meantime, the only way you can try one of those experimental treatments is by volunteering to be a test subject in a clinical trial. Yeah, a human guinea pig.

But there’s a catch: Experimental treatments pose potential health risks (including, in rare cases, death) as well as potential benefits. And because experimental treatments are so new, nobody really knows what those possible risks and benefits might be. What’s more, most experimental treatments never make it out of the lab because they simply don’t work; or in some instances, they do more harm than good.

But on the flip side, some newly invented treatments prove to be major breakthroughs. So by participating in a clinical trial, you can get access to an experimental treatment long before you otherwise would. If the word experimental gives you the creeps, you’re right to be cautious. Nonetheless, keep in mind that every medication you currently take was once experimental. And likewise, many experimental treatments now undergoing scientific scrutiny will one day earn a place in your physician’s quiver of treatment options.

At this very moment, hundreds of thousands of clinical trials are taking place around the globe. Hence, you can bet that scientists somewhere in the world are recruiting volunteers right now in hopes of coming up with new and improved treatments for your particular type of pain. But how do you locate a clinical trial near you that’s focusing on your specific health problem? How do you find the eligibility requirements for acceptance into a clinical trial? What questions should you ask when deciding whether to be a test subject? And how do you actually sign up for a clinical trial?

In this episode, we tell you about an online tool named ClinicalTrials.gov that promises to give you those answers. Moreover, we let you know how well ClinicalTrials.gov works based on three criteria:

•  Is it effective?

•  Is it easy to use?

•  Is it inexpensive?

We also dig into the potential benefits and drawbacks of volunteering for a clinical trial. In addition, we’ll talk you through the different types of clinical trials and tell you which ones are more likely to involve experimental treatments that may actually pan out. We then wrap up the episode by revealing the Painopolis rating we give ClinicalTrials.gov based on its usefulness, user-friendliness and cost.

By the way, ClinicalTrials.gov is loaded with lots of technological bells and whistles that can easily confound first-time users. So after you’ve listened to our review, check out our free ClinicalTrials.gov video tutorial below.

Watch our ClinicalTrials.gov demo:

EASIER THAN IT LOOKS: Give us 32 minutes, and we’ll take you on a tour of ClinicalTrials.gov.

Update:

The U.S. National Library of Medicine is in the process of revamping ClinicalTrials.gov. Consequently, the newest version will differ in some ways from how ClinicalTrials.gov looks and performs in this video tutorial.

Music:

Our theme music is “Gentle Storm,” composed and performed by Betsy Tinney (betsytinney.com).

Wish other people in chronic pain knew about Painopolis? To help spread the word, please post a review about Painopolis on Apple Podcasts. We’d be forever grateful.

Shannon Stocker was 30 years old and in her last year of medical school when she first felt the pain. It started in her right arm and eventually became so debilitating that this newly minted M.D. was forced to put her medical career on permanent hold.

“I had nothing left to lose. Either I was going to wake up better, or I wasn’t going to wake up. And either scenario was better than the one that I was in.”

Over time, the pain spread throughout her body and felt as if she’d been doused with gasoline and set on fire. Even ordinary sensations—raindrops on her skin, a gentle hug—became unbearably excruciating. Woundlike ulcers and fiery discolorations riddled her skin. After seven years of suffering, she found herself relying on a wheelchair and continuing to spiral downward. Some doctors predicted she’d be dead within two years.

The cause of her horrifying symptoms was a neurological disorder called reflex sympathetic dystrophy, or RSD. Many doctors also refer to it as complex regional pain syndrome, or CRPS. Why RSD/CRPS strikes some people but not others is a mystery. Typically, it’s sparked by an injury that inexplicably throws the body’s nervous system into chaos. This disease then unleashes pain so severe that RSD/CRPS outranks every other medical condition on the McGill pain scale, including cancer pain and amputation.

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After exhausting all other treatment options, she decided to gamble on a high-risk medical procedure called ketamine-coma therapy, previously administered to only a few dozen people worldwide. To undergo the procedure, she’d need to travel to a hospital in Monterrey, Mexico, because the FDA hasn’t approved ketamine-coma therapy for use in the U.S. Given the procedure’s experimental status, riskiness and five-figure cost, no physician in the U.S. even offers it.

In Mexico, her doctor would use massive doses of ketamine—a drug best known as a horse tranquilizer and as a powerful hallucinogen often sold on the street as “Special K”—to put Stocker into a coma lasting five days. Just as you might turn a glitchy computer off and then turn it back on again to make it work properly, Stocker hoped that the ketamine coma would likewise reboot her nervous system and thereby dial down the pain.

But during those five days, ketamine also would unleash hallucinations so fearsome that she’d need to be tied to her hospital bed to keep from thrashing around and hurting herself. Going into it, she knew that the treatment and related expenses would cost $40,000. But despite some promising research data, the treatment came with no guarantee that it would work—or that she’d even survive it.

Today, nine years after she awakened from the ketamine coma, we talk to Stocker about why someone trained as a physician would seek out a treatment that American doctors don’t even perform; how she stayed hopeful during those many years of agony; what lessons this doctor-turned-pain-patient learned about navigating the healthcare system that the rest of us in chronic pain need to hear; and lastly, how she’s doing now. (Quick hint: she’s given birth to two children since the coma!)

Today, Stocker talks about:

•  Why she saw more than 30 doctors before finally receiving an accurate diagnosis—and why it came not from a physician but from her non-doctor husband Greg, a salesperson who exhaustively researched her symptoms and advocated on her behalf

•  Why physicians often act dismissively toward people with chronic pain—and how patients should respond

•  Why she signed up for an experimental medical procedure so risky that she might not survive it—but was unfazed by that risk

•  What it was like to travel outside the U.S. for treatment

•  How a supportive family member can play an indispensable role in helping a person in pain hang on to hope

•  What she does nowadays to keep her pain in check—and how she thwarts occasional flare-ups

Interviewee:

Shannon Stocker is a mom and writer who writes books for children. In September 2017, her writing will be published in Chicken Soup for the Soul: Dreams and the Unexplainable. And in 2019, Sleeping Bear Press will publish her first picture book. She also publishes a blog and other nonfiction that explore a variety of topics, including her battle with chronic pain. She and Greg kept a day-by-day blog detailing her experience of undergoing ketamine-coma therapy in Mexico. In addition, she’s on the board of directors of the International Research Foundation for RSD/CRPS.

Stocker’s Ketamine-Coma Transformation:

At first glance, the women in the two videos below appear to be two different people. The first video shows a pain-wracked invalid. The second shows a vibrant singer performing in front of an audience. In fact, they’re both videos of Stocker—the first taken shortly before she underwent ketamine-coma therapy; the second taken seven years later.

It’s hard to imagine a more vivid example of what can happen when someone in chronic pain latches on to an effective treatment. In her case, ketamine didn’t just trigger an improvement. It triggered an astounding transformation. To see the change for yourself, click on the “before-ketamine” video (“Part 1: Pre-coma Evaluation”) and “after-ketamine” video (“Part 3: Dr. Stocker ‘Live’”) below:

Shannon Stocker, shortly before undergoing ketamine-coma therapy. (Source: Anthony Kirkpatrick, M.D., Ph.D.)

Shannon Stocker, seven years after undergoing ketamine-coma therapy. (Source: Anthony Kirkpatrick, M.D., Ph.D.)

Straight from the lab:

Just how strong is the evidence that ketamine can reduce the pain of RSD/CRPS? And what other treatments might help relieve it? Scientists have been asking those same questions. Explore this sampling of their research to date on ketamine and other options:

•  This 2015 systematic review article evaluates 45 studies and case reports involving the use of ketamine to treat RSD/CRPS.

•  This 2014 review article evaluates the quality of the published research involving the use of ketamine to treat RSD/CRPS, along with providing an overview of how ketamine has been used historically, both medically and illicitly.

•  This 2014 review article evaluates the benefits and risks of using ketamine in the treatment of chronic pain, explains the neurochemical changes that can produce neuropathic pain, and suggests how ketamine may interact with those changes to reduce pain.

•  This 2013 review article draws upon hundreds of published studies to discuss the merits of various treatment options and to identify key indicators for diagnosing RSD/CRPS.

•  This 2013 Cochrane Library systematic review article compiles data from 19 earlier review articles involving randomized clinical trials to assess various RSD/CRPS treatment options.

•  This 2008 German open-label Phase II clinical trial (20 individuals with RSD/CRPS were treated with ketamine-coma therapy and tracked for six months) reports significant pain relief and improved quality of life.

•  This 2007 study involving nine American patients with RSD/CRPS who underwent ketamine-coma therapy in Germany found that the procedure significantly reduced their pain without causing any adverse cognitive effects when measured six weeks post-coma.

For more information:

•  The RSD/CRPS Treatment Center and Research Institute and the International Research Foundation for RSD/CRPS, based in Tampa, Fla. Both were established by Anthony Kirkpatrick, M.D., Ph.D., a physician who treated Stocker on an outpatient basis in Tampa and who also coordinated her treatment in Mexico.

•  The Reflex Sympathetic Dystrophy Syndrome Association (RSDSA)

•  The National Institute of Neurological Disorders and Stroke’s “Complex Regional Pain Syndrome Fact Sheet”

Update: 

According to Dr. Kirkpatrick, no medical institutions in the United States, Mexico or elsewhere are currently performing ketamine coma therapy on a routine basis.

Music:

Our theme music is “Gentle Storm,” composed and performed by Betsy Tinney (betsytinney.com).

Bonus:

Can’t sleep because of chronic pain? (And wondering if weed might help?) Get our new book, Cannabis Lullaby: A Painsomniac’s Quest for a Good Night’s Sleep. Available in print, ebook, and audiobook, it’s brimming with real-world, evidence-based answers. The author is Painopolis co-host David Sharp, an award-winning health journalist who nipped his pain-fueled insomnia in the bud. Buy a copy today at: painopolis.com/cannabis-lullaby/

Our toolbox:

Check out the following sponsored services we use and love.

Please support Painopolis:

Did you find this episode worth hearing? If so, kindly:

We appreciate it! Your donation allows us to keep bringing you great stories, strategies, and insights.

Every time you seek treatment for your chronic pain, you rightly expect to have your doctor’s undivided attention in the examining room. You also expect one other thing: your doctor’s undivided loyalty. After all, you’re the one picking up the tab, so your doctor should have no hidden incentives to do anything other than recommend the best possible care tailored to your particular needs.

“As a patient, I should know if my doctor is loyal to me, or if there are divided loyalties. But on the front of the doctor’s door, there’s no sign that says, ‘Full disclosure: We take money from these pharmaceutical companies, and here’s how much we’re getting.’”

The fact is, however, you may not be your doctor’s only cash stream. In the U.S., many pharmaceutical and medical device manufacturers have struck up financial relationships with doctors as a way for those companies to promote their products.

The exact dollar amount that physicians receive from these companies varies widely. On the low end of the compensation scale, drug reps might pick up the cost of doctors’ lunches in exchange for a few minutes of their time. On the high end, pharmaceutical and medical device companies may hire doctors to work as consultants, cover doctors’ costs to attend medical conferences, or pay doctors to give speeches. For some physicians, these transactions are incredibly lucrative, totaling hundreds of thousands of dollars or more per year. For other physicians, the outlay amounts to a free sandwich, if that. Not all physicians in the U.S. accept payments and perks from pharmaceutical and/or medical device manufacturers, though most do.

Granted, there’s nothing illegal about these financial relationships. Nor do the payments and gifts necessarily mean that the quality of care you receive will be compromised. Nonetheless, various studies indicate that doctors who obtain these sorts of payments and perks prescribe pricier brand-name drugs in greater proportion than their peers who haven’t received any remuneration. The larger the payments, the likelier doctors are on average to prescribe brand-name drugs over cheaper generics. And for many patients, there’s an undeniable ick factor to the notion that their doctor might be recommending medications or medical devices made by companies from which the doctor has benefitted financially.

For that reason alone, you deserve to know about these payments in order to be fully informed when choosing your healthcare team and making healthcare decisions. Until relatively recently, however, patients had no way of finding out whether their doctors had any financial ties to drug and device makers. Understandably, a lot of patients would be extremely hesitant to broach the topic with their doctor for fear of sounding accusatory and souring the relationship.

Fortunately, the 2010 Affordable Care Act, a.k.a. Obamacare, has saved you the trouble. That law requires pharmaceutical and medical device companies to provide the federal government with information about any gifts or payments made to physicians and other types of healthcare professionals.

What’s more, ProPublica, a nonprofit investigative journalism organization, has compiled that ocean of data into an online research tool called Dollars for Docs. It contains information about payments made to more than 800,000 physicians. With just a few keystrokes, Dollars for Docs can tell you whether your doctor (or any other doctor in the U.S. that you’re curious about) has taken money or gifts from drug and medical device companies; what the monetary value of those payments and perks was; which companies provided them; and for what reason. Dollars for Docs can also provide similar financial data about your dentist, optometrist, chiropractor, and podiatrist.

In this episode, we let you know how well Dollars for Docs works based on three criteria:

•  Is it effective?

•  Is it easy to use?

•  Is it inexpensive?

And we wrap up the episode by revealing the Painopolis rating we give Dollars for Docs based on its usefulness, user-friendliness and cost.

By the way, the U.S. government also runs a website that offers information about the financial relationships that U.S. doctors have with drug and device makers. It’s called OpenPaymentsData.CMS.gov. In this episode, Painopolis decided to focus on Dollars for Docs, which we found to be a bit more user-friendly.

If you’ve wondered whether your doctor has financial ties with Big Pharma, this episode is for you.

Update:

Dollars for Docs has expanded to include payments that doctors received from drug and medical device makers in 2015. When compared to 2014 data, this more recent information indicates that the overall amount paid to doctors by those companies is holding steady. Dollars for Docs also now includes information about payments made to U.S. teaching hospitals.

Music:

Our theme music is “Gentle Storm,” composed and performed by Betsy Tinney (betsytinney.com).

Wish other people in chronic pain knew about Painopolis? To help spread the word, please post a review about Painopolis on iTunes. We’d be forever grateful.

You’ve probably heard about our guest today, maybe not by name but certainly by way of urban legend. The story goes like this: In Mississippi, the U.S. government has been growing marijuana for decades and giving the crop for free to a small, select group of Americans suffering from chronic pain and other serious medical conditions. And it’s all perfectly legal. According to this urban legend, these recipients could walk up to the door of the nearest DEA office, light up a joint made from government-provided weed, and not get arrested. What’s more, anywhere in the U.S. that it’s legal to smoke a cigarette, it’s legal for these people to smoke marijuana.

“The cop comes up to me and says, ‘My God, you reek of marijuana!’ I said, ‘I know. I just smoked two joints coming here. I’ve got a prescription for it.’”

Well, the story’s not just an urban legend. And today, we talk to one of those recipients, Irvin Rosenfeld. He’s a 63-year-old Florida stockbroker who’s received free U.S.-government-approved marijuana for more than three decades. He uses it to treat chronic pain caused by congenital bone tumors that conventional drugs failed to alleviate. That’s right: the same federal government that locks up thousands of people for using marijuana has also been doling out marijuana to Rosenfeld.

We chat with him about how he persuaded the feds to stop bogarting the pot; what the rest of us with chronic pain can learn from his decades-long reliance on medical marijuana; and what happened the day he lit up one of his legal joints at Disneyworld.

Today, Rosenfeld talks about:

•  How he went from being the Nancy “Just Say No” Reagan of his high school to discovering that marijuana drastically reduced his severe chronic pain

•  Why marijuana surpasses prescription painkillers at controlling his pain and allowing him to live a full, active life that includes sailing and playing softball

•  How he uses marijuana on a daily basis to rein in his severe chronic pain

•  How he pulled off the nearly impossible feat of persuading the U.S. government to provide him with a legal, lifetime supply of medical marijuana

•  What the same amount of pot would have cost him if he’d bought in on the streets instead of getting it free from the federal government

•  Why this successful stockbroker’s clients are happy to trust their investments with a guy who smokes 10 joints a day

•  The Kafkaesque craziness that can happen when he smokes marijuana in public and can’t convince local police that he’s toking legally

Interviewee:

Irvin Rosenfeld has experienced pain from congenital bone tumors since he was a boy. He works as a stockbroker. In addition, he’s a board member of Patients Out of Time, a nonprofit organization that advocates for the legalization of medical marijuana as a legitimate medicine. He’s also a director and co-founder of The Silver Tour, a campaign to educate older people about the medicinal benefits of marijuana and encourage them to vote for its legalization. He recounts his experiences in his riveting autobiography, My Medicine: How I Convinced the U.S. Government to Provide My Marijuana and Helped Launch a National Movement.

Straight from the lab:

Wondering if medical marijuana might be an effective treatment for chronic pain? Scientists have been asking that same question. Explore this sampling of their research to date:

•  The Missoula Chronic Clinical Cannabis Use Study investigated marijuana’s long-term effect on Irvin Rosenfeld and three other people receiving legal marijuana through the U.S. government’s Compassionate Investigational New Drug Program.

•  This systematic review of 79 randomized controlled trials studied marijuana as a possible treatment for chronic pain from a variety of causes, including cancer pain, fibromyalgia, multiple sclerosis-related spasticity, diabetic neuropathy, HIV-associated sensory neuropathy, chemotherapy-induced pain. This review also explored marijuana’s effect on chemotherapy-related nausea and vomiting, HIV-related wasting syndrome and sleep disorders.

•  This review of 28 randomized clinical trials analyzed marijuana’s effect on chronic pain, neuropathic pain and multiple sclerosis-related spasticity.

•  This double-blind, placebo-controlled crossover study gauged marijuana’s ability to ease neuropathic pain.

•  This systematic review of 18 randomized trials analyzed marijuana’s pain-relieving effect on noncancer pain, including neuropathic pain, fibromyalgia, rheumatoid arthritis and mixed chronic pain.

•  This prospective trial investigated marijuana’s ability to reduce symptoms of Crohn’s disease.

•  This randomized controlled trial tested whether smoking marijuana helped people reduce the severity of their neuropathic pain and get a better night’s sleep.

•  This review article analyzed the effect of marijuana and other alternative treatments on the symptoms of multiple sclerosis and other serious ailments.

•  This meta-analysis of five randomized controlled trials explored the effectiveness of inhaled marijuana at easing neuropathic pain.

•  This review article investigated the effectiveness of various forms of marijuana and other types of alternative therapy at relieving multiple-sclerosis-related symptoms.

Music:

Our theme song is “Gentle Storm,” composed and performed by Betsy Tinney (betsytinney.com).

Bonus:

Can’t sleep because of chronic pain? (And wondering if weed might help?) Get our new book, Cannabis Lullaby: A Painsomniac’s Quest for a Good Night’s Sleep. Available in print, ebook, and audiobook, it’s brimming with real-world, evidence-based answers. The author is Painopolis co-host David Sharp, an award-winning health journalist who nipped his pain-fueled insomnia in the bud. Buy a copy today at: painopolis.com/cannabis-lullaby/

Our toolbox:

Check out the following sponsored services we use and love.

Please support Painopolis:

Did you find this episode worth hearing? If so, kindly:

We appreciate it! Your donation allows us to keep bringing you great stories, strategies, and insights.

By now, we’ve all heard that eating a plant-based diet protects against cardiovascular disease. But can you eat your way to better health if your medical problem is chronic pain? And if so, which diet could accomplish that, and how quickly? And could it do so even more effectively than prescription drugs?

“The pain was coming all the time. The bathroom was becoming more frequent—20 or 30 times a day. So I decided, ‘All right, let’s go the route of diet and see what we can do.’”

In June 2016, 32-year-old dental hygienist Gabrielle Fennimore decided to find out. She’d suffered for years with ulcerative colitis, an autoimmune disease that attacks the colon and triggers severe abdominal pain and bloody diarrhea. She took anti-inflammatory medications in hopes of controlling those symptoms, but the pain kept getting worse. And the bloody diarrhea did, too, forcing her to make as many as 30 trips a day to the bathroom.

Then last summer, she took the gutsy step of flying from her home on the east coast to attend a 10-day dietary program in California run by internist John McDougall. Here’s what you need to know about McDougall: he’s all about eating exclusively starches, vegetables and fruit. That means no meat, no dairy, no eggs, no cooking oils, and no junk food. In other words, goodbye, typical American diet! Unlike Fennimore’s physician back home who championed medications instead of diet to control her ulcerative colitis, McDougall argues just the opposite.

He claims that eating low on the food chain can fend off the plague of chronic ailments targeting countries that follow a Western-style diet. Those diet-related diseases, he says, include the obvious ones: clogged arteries and diabetes, for starters. But he also insists that our Western way of eating puts us at greater risk for certain cancers (including breast, colon and prostate cancer) as well as autoimmune diseases like multiple sclerosis, rheumatoid arthritis, Crohn’s disease and ulcerative colitis. In fact, those diseases are rare in parts of the world where people eat primarily grains, vegetables and fruit. Moreover, McDougall contends that a plant-based diet can promote healing in people who already have those diseases.

Other researchers have also linked the Western diet with an upswing in various chronic diseases. For Crohn’s disease and ulcerative colitis, however, the scientific research to date has been inconsistent in nailing down that cause-and-effect relationship and pinpointing which specific elements within the Western diet might be most to blame. So McDougall’s approach sounds promising in theory. But when you put a plant-based diet to the test in the real world, can it actually reduce chronic pain and other symptoms enough to make a difference?

Well, it’s now been the better part of a year since Fennimore took McDougall’s advice. And it hasn’t been easy. Her colon was already so fragile that for the first few weeks she subsisted only on pureed squash soup. And because of that hyper-spartan menu, her weight quickly dropped to an emaciated-looking 88 pounds.

Despite those challenges, she stuck with it. And today, eight months after she opted for a plant-based diet and weaned herself off medications, we find out if her symptoms have improved; how she weathered the trial-and-error ordeal of figuring out which foods to include on her grocery list; why that list is still limited to just 15 items; and lastly, how hard it’s been for this self-confessed foodie to give up fine dining in favor of a menu that’s heavy on squash, rice, and purple sweet potatoes.

Today, Fennimore talks about:

•  The emotional shock of waking up after a colonoscopy as a 21-year-old and being told that she had inflammatory bowel disease

•  Why she tried a powerful immunosuppressant medication recommended by her doctor—but stopped taking it after only five days

•  How she managed to work full-time despite needing to use the bathroom as many as 30 times a day

•  Why she decided to stop taking the prescription medications recommended by her doctor back home

•  Why she went to the trouble and expense of traveling cross-country to learn about plant-based eating from a leading expert rather than adopting the diet on her own

•  Why she stuck with a plant-based diet even though her symptoms initially failed to respond

•  Her method of identifying which foods help control her ulcerative colitis—and which foods are likely to ignite a flare-up

Interviewee:

Gabrielle Fennimore has experienced digestive issues since she was a girl. She works as a dental hygienist.

Straight from the lab:

Wondering if a plant-based diet might help ward off inflammatory bowel disease and other ailments? Scientists have been asking that same question. Explore this sampling of their research to date:

•  This 2016 review article published in the World Journal of Gastrointestinal Pharmacology and Therapeutics finds that a high-fat, low-fiber, Western diet is strongly associated with an increased incidence of inflammatory bowel disease, while vegetables, fruit, and omega-3 offer a protective effect.

•  This 2016 review article by Austrian researchers cites epidemiological evidence indicating an increased risk of inflammatory bowel diseases among people who eat fast food at least twice a week or follow a Western-style diet that emphasizes meat, animal fat, refined sugar, and foods high in omega-6 fatty acids (found in red meat and certain types of cooking oils and margarine). Other data cited in this study suggest that some strains of probiotics may be helpful in managing ulcerative colitis and pouchitis. The data also indicate that the risk of pediatric inflammatory bowel disease—particularly Crohn’s disease—appears lower among children whose diets include plenty of vegetables, fruits, nuts, grains, fish, and olive oil.

•  Drawing upon data from human and animal studies, this 2016 French study adds fuel to the theory that the high-fat, high-sugar Western diet may promote inflammation within the digestive tract and increase the risk of inflammatory bowel disease.

•  In this 2014 study by John McDougall, patients who followed his plant-based diet for just seven days experienced measurable improvements in a variety of important biomarkers—including blood pressure, blood glucose, cholesterol levels, and body weight—despite many of those individuals simultaneously discontinuing their prescription medications.

•  This 2015 review article explores the rationale and scientific evidence behind several other types of diets used by people to control their inflammatory bowel disease, including the Specific Carbohydrate Diet, the low-FODMAP Diet, the Anti-Inflammatory Diet, and the Paleo Diet.

•  This video report by NutritionFacts.org gives a quick overview of studies investigating the anti-inflammatory properties of various foods, with purple potatoes providing an especially potent anti-inflammatory benefit.

For more information: 

•  The Starch Solution by John A. McDougall, M.D., and Mary McDougall provides a readable, easy-to-follow guide to the plant-based diet he recommends for preventing and treating a variety of chronic diseases.

•  In Dr. McDougall’s Digestive Tune-Up, McDougall makes the case that a plant-based diet can help fend off and treat a wide assortment of digestive-tract-related diseases, including Crohn’s disease, ulcerative colitis, diverticulosis, celiac disease, constipation, and gallstones.

•   The McDougall 10-Day Live-In Program is held multiple times a year in Santa Rosa, Calif., at the Flamingo Conference Resort and Spa.

•  Also in Santa Rosa, Calif., TrueNorth Health Center offers live-in accommodations and an integrative-medicine approach to treating autoimmune diseases, diabetes, hypertension, and many other health disorders.

Photo Credit:

This episode’s featured image, a circa-1930 photograph entitled “Danforth Fruit Store,” is from the City of Toronto Archives (Fonds 1244, Item 339).

Music:

Our theme music is “Gentle Storm,” composed and performed by Betsy Tinney (betsytinney.com).

Wish other people in chronic pain knew about Painopolis? To help spread the word, please post a review about Painopolis on Apple Podcasts. We’d be forever grateful.

Is your doctor urging you to lose weight, limit your sodium, get more active, and make other lifestyle changes that push your willpower to the breaking point?

“What I like about MyFitnessPal is, everybody says you need someone to be your Accountability Buddy, but it’s great when you can be your own Accountability Buddy.”

Today, we tell you about an online tool named MyFitnessPal that takes the drudgery out of adopting new health habits. Like a dietitian, MyFitnessPal adds up the calories and nutritional content of everything you eat. Like a coach, it tallies the energy you burn from exercising. The calories-expended-per-activity database includes everything from ice fishing in a sitting position (136 calories per hour for a 150-pound woman) to Tai Chi (272 calories) to chopping wood (422 calories) to jogging in place (544 calories). And like the Ghost of Fitness Yet to Come, MyFitnessPal predicts your future weight and the date the New You will appear, based on your current regimen. If that forecast doesn’t startle you into sticking with it, nothing will.

We let you know how well MyFitnessPal works based on three criteria:

•  Is it effective?

•  Is it easy to use?

•  Is it inexpensive?

We then reveal the Painopolis rating we give MyFitnessPal based on its usefulness, user-friendliness and cost. If you believe—as we do—that you sometimes need new tools to break old habits, this episode is for you.

Music:

 •  Our theme music is “Gentle Storm,” composed and performed by Betsy Tinney (betsytinney.com).

Wish other people in chronic pain knew about Painopolis? To help spread the word, please post a review about Painopolis on iTunes. We’d be forever grateful.

Today, our intrepid journalist makes the painful trip to California to attend that clinic—painful because he’s in excruciating pain when he’s sitting. What’s more, he knows full well that yet another urologist plus a physical therapist will not only be looking under his hood, so to speak, but sticking their fingers . . . up his tailpipe, too. The trip also represents a big gamble, because if the clinic’s approach fails to work, he’s got no plan B.

“There’s nothing like excruciating pain for getting you to change your life.”

Sharp wraps up his chronic-pain story with specifics about how he’s doing today. He also reveals the strategies he now uses to rein in his pelvic pain. Thanks to these strategies, he’s gone from being nearly bedridden to living a full life.

In this episode, Sharp talks in-depth about:

•  The key components of the six-day pelvic-pain clinic he attended

•  How he learned a type of meditation called “paradoxical relaxation” that, with practice, allowed him to downshift the tension in his body so his muscles could heal

•  Trigger-point therapy—what it felt like to undergo the finger-in-the-rectum sessions and how, over time, the therapy deactivated his muscle tension

•  How his turbulent childhood led him unknowingly to equate muscle tension with safety

•  How psychotherapy helped him work through childhood trauma and gain a new way of dealing with pelvic pain—and with life

•  How he successfully overcame the panic attacks that began a few months after he started practicing meditation, the cornerstone of his treatment regimen

•  Why you need a support team to help you deal with chronic pain—and who to keep off your support team

•  The top six things he does on a daily basis to reduce his pain. Hear a snippet now: 

Interviewee:

•  David Sharp is a journalist and founding editor of Painopolis.

Pelvic pain overview:

•  Chronic pelvic pain syndrome strikes males and females. Here are the symptoms associated with the disorder.

Resources:

•  National Center for Pelvic Pain Research

•  Prostatitis-CPPS-Interstitial Cystitis Forum is a popular forum where people with pelvic pain share insights, encouragement and treatment experiences.

•  A Headache in the Pelvis by David Wise, Ph.D., and Rodney Anderson, M.D.

•  Paradoxical Relaxation by David Wise, Ph.D.

•  The Trigger Point Therapy Workbook by Claire Davies and Amber Davies

•  The Long Run by Matt Long with Charles Butler

The Wise-Anderson Protocol:

•  Here are the components of the Wise-Anderson Protocol.

•  These studies document the effectiveness of the protocol in treating chronic pelvic pain syndrome.

•  Developers of the protocol discuss their pelvic-pain treatment in this video.

Updates:

When Sharp attended the National Center for Pelvic Pain Research’s (NCPPR) six-day pelvic-pain clinic in 2004, it was physically impossible for patients (other than maybe those who were carnival contortionists) to perform internal trigger-point therapy on themselves, given the unreachable location of the trigger points. Since then, the NCPPR has created an FDA-approved wandlike device that allows patients to self-administer trigger-point therapy. Also, the NCPRR now treats women as well as men.

Music:

 •  Our theme music is “Gentle Storm,” composed and performed by Betsy Tinney (betsytinney.com).

Bonus:

Can’t sleep because of chronic pain? (And wondering if weed might help?) Get our new book, Cannabis Lullaby: A Painsomniac’s Quest for a Good Night’s Sleep. Available in print, ebook, and audiobook, it’s brimming with real-world, evidence-based answers. The author is Painopolis co-host David Sharp, an award-winning health journalist who nipped his pain-fueled insomnia in the bud. Buy a copy today at: painopolis.com/cannabis-lullaby/

Our toolbox:

Check out the following sponsored services we use and love.

Please support Painopolis:

Did you find this episode worth hearing? If so, kindly:

We appreciate it! Your donation allows us to keep bringing you great stories, strategies, and insights.

“When you’re in terrible pain, doing nothing is not an option. It’s like, ‘I can’t just lay here and hope the pain goes away by itself.’”

Plagued for years by intermittent pelvic pain that his doctors wrongly diagnosed as mere prostatitis, Sharp learns the hard way that he’s actually got chronic pelvic pain syndrome. It’s a muscle-tension disorder that he likens to, at its worst, being impaled on a spear. But he’s not all doomsday about his diagnosis. Rather than let it derail his life, he’s figured out ways to deal with it. Before he turns the microphone on fellow pain sufferers, he thought it only fair to share his own pain story.

Sharp talks in-depth about:

•  The frightening moment when his pelvic pain went from mere discomfort to DEFCON 1

•  How he got stuck in a “see the doctor/take antibiotics/get better/get worse” loop . . . for 20 years

•  How a pelvic-pain internet forum led him to discover the health card he really got dealt. Hear a snippet:

•  His unrelenting search for strategies and tools to relieve his pain

•  His “I’m an experiment of one” attitude toward trying new treatments

•  His decision to travel to an out-of-state pelvic-pain clinic with an unconventional protocol

•  Seeking his wife’s help with his life-altering condition

•  How he “rebooted” his body after sleeplessness and anxiety hit

In next week’s episode, he describes his long, strange journey from being nearly bedridden to resuming a normal life.

Interviewee:

•  David Sharp is a founding editor of Painopolis.

Pelvic pain overview:

•  Chronic pelvic pain syndrome strikes males and females. (So much for it being the same thing as prostatitis.) Here are the symptoms associated with the disorder.

Resources:

•  National Center for Pelvic Pain Research

•  Prostatitis-CPPS-Interstitial Cystitis Forum is a popular forum where people with pelvic pain share insights, encouragement and treatment experiences.

•  A Headache in the Pelvis by David Wise, Ph.D., and Rodney Anderson, M.D.

•  Paradoxical Relaxation by David Wise, Ph.D.

•  The Trigger Point Therapy Workbook by Claire Davies and Amber Davies

•  The Long Run by Matt Long with Charles Butler

The Wise-Anderson Protocol:

•  Here are the components of the Wise-Anderson Protocol.

•  These studies measure the effectiveness of the protocol in treating chronic pelvic pain syndrome.

•  The developers of the protocol discuss their pelvic-pain treatment in this video.

Music:

 •  Our theme music is “Gentle Storm,” composed and performed by Betsy Tinney (betsytinney.com).

Wish other people in chronic pain knew about Painopolis? To help spread the word, please post a review about Painopolis on iTunes. We’d be forever grateful.