Experts Divided About Benefits and Harms of Opioid Tapering

By Crystal Lindell

The first time I tried to do a full taper to go off morphine – after having been on it for years – I got hit with days-long withdrawal symptoms. Restless legs, diarrhea, cold sweats, extreme anxiety, insomnia, and more. It was horrible. 

So I called my doctor and asked for advice. He was not helpful, to say the least. He basically said that none of his other patients had ever had any withdrawal symptoms from morphine, so he didn’t know what to tell me. The implication was that this was a “me” problem. 

Looking back, I’m pretty sure that his other patients had just never told him about their withdrawal symptoms, so he assumed that they didn’t have any. That’s when I first realized that doctors were not a great resource for how to taper patients off opioids. 

A new study in the journal Pain Practice confirms many of my suspicions. It explored the  attitudes of healthcare professionals about the benefits and harms of maintaining, tapering or discontinuing long-term opioid therapy. 

The researchers analyzed the opinions of 28 “opioid safety experts.” Of those, 19 were prescribing physicians, while the rest were psychologists, researchers, or healthcare administrators. 

What they found is that there is little consistent advice or help from the “experts” about tapering. If you asked one medical professional for their opinion, you may get a completely different answer from another one. 

For example, over a third of the participants (36%) believe that long-term opioid therapy should be continued, while an equal percentage think opioids should be discontinued. 

More than half (57%) believe that patients can be harmed by tapering and/or discontinuation. But 18% think tapering to a lower dose is not harmful, and 29% think patients won’t be harmed by discontinuation. There were also quite a few “experts” who were neutral on the issue.   

Some recommended slow tapers (even when a prior taper was unsuccessful) and some advocated switching patients to buprenorphine, an opioid sometimes used to treat pain but is more widely used to treat opioid use disorder.

Some would try switching patients to non-opioid pain medications and therapies (even if they were unhelpful in the past), while others favor shared decision-making with patients to give them a role in deciding treatment.

Interestingly, few of the experts said they would assess patients for opioid use disorder or overdose risk.

The bottom line is that there’s little consensus about the right treatment path for patients on long-term opioids. The researchers said medical guidelines that might address these issues “may be difficult to utilize,” leaving doctors on their own to make decisions about professional liability, changing opioid regulations, patient preferences and treatment.

“In the meantime, individual care decisions that involve weighing relative harms should draw on longstanding norms of ethical medical care that call for informed consent and patient-provider conversations grounded in mutual respect,” the authors write.

I’m glad to see them specifically mention "mutual respect” between patients and providers, because there’s an obvious answer to many of these questions: Talk to patients and then believe them. 

I can guarantee you that I, as a longtime pain patient, would have more practical advice about tapering and withdrawal than many doctors or medical experts. There’s a certain amount of insight and empathy that comes from firsthand experience with withdrawal. 

I do give credit to co-author Kurt Kroenke, MD, of the Regenstrief Institute, for warning in a press release that taking patients off opioids “may result in return or worsening of chronic pain, mental health issues, drug seeking and potentially overdose and death.” 

Kroenke also notes that opioids help patients have a family life, hold a job, participate in social activities, and improve their quality of life. 

Indeed, that’s exactly the point: Opioids do help patients in a variety of ways. And in many cases, they are the only effective pain treatment. 

My hope is that future studies like this will include more direct input from patients about their experiences. If researchers really want to figure out the best guidelines for when and how to taper successfully, they should reach out to long-term opioid patients. 

Next time, instead of talking to 28 “experts,” researchers should talk to 28 patients.

New Guideline Recommends Against Injections for Chronic Back Pain

By Pat Anson

An international panel of experts has released a new guideline strongly recommending against injections for chronic back pain, saying the procedures provide little or no pain relief and there is little evidence to support their use.

The guideline, published in The BMJ, covers 13 commonly used interventional procedures, including epidural injections, joint injections, intramuscular injections, nerve blocks, and radiofrequency ablation. The injections usually involve steroids, a local anesthetic, or a combination of the two.

The expert panel conducted an analysis of dozens of clinical trials and studies, and found “no high certainty evidence” of pain relief for any of the procedures. There was only low or moderate evidence that injections work better than a placebo or sham procedure.

Injections for chronic axial or radicular spine pain have become increasingly common in recent years, and are often touted as safer alternatives to opioid medication.

However, the injections also come with risks, including infections, prolonged pain and stiffness, accidental punctures of the spinal membrane, and rare but “catastrophic complications” such as paralysis. The risks are magnified because many of the procedures are performed multiple times on the same patient.

“The panel had high certainty that undergoing interventional procedures for chronic spine pain was associated with important burden (such as travel, discomfort, productivity loss), which would be recurring as these interventions are typically repeated on a regular basis, and that some patients would bear substantial out-of-pocket costs,” wrote lead author Jason Busse, DC, a professor of anesthesia at McMaster University in Ontario, Canada.

“The panel concluded that all or almost all informed patients would choose to avoid interventional procedures for axial or radicular chronic spine pain because all low and moderate certainty evidence suggests little to no benefit on pain relief compared with sham procedures, and these procedures are burdensome and may result in adverse events.”

Chronic back pain is the leading cause of disability worldwide. Over 72 million U.S. adults suffer from chronic low back pain, according to a 2022 Harris Poll. About a third of those surveyed rated their pain as severe and nearly half said they experienced chronic back pain for at least five years. The vast majority (80%) rated opioids as the most effective treatment.

Pain Management Needs ‘Major Rethink’

In an editorial also published in The BMJ, Jane Ballantyne, MD, an anesthesiologist and retired professor at the University of Washington, said the new guideline raises questions about whether interventional procedures should even be used to treat chronic back pain. 

“The question this recommendation raises is whether it is reasonable to continue to offer these procedures to people with chronic back pain. Chronic back pain is highly prevalent, a great deal of money is spent on the injections, and a lot of patient hopes and expectations are vested in this type of treatment,” wrote Ballantyne. 

“One might ask how the situation arose whereby we spend so much of our healthcare capital on a treatment for a common condition that compromises the lives of so many people but seemingly does not work.”

For Ballantyne to ask that is more than a little ironic. She is a longtime anti-opioid activist, a former president of Physicians for Responsible Opioid Prescribing (PROP), and was a key advisor to the CDC when it drafted guidelines that strongly recommend against opioid therapy.

With opioids increasingly difficult to obtain, many patients with chronic back pain have no alternative but to have interventional procedures, spinal surgeries, or implanted medical devices such as pain pumps and spinal cord stimulators.

Some doctors and pain clinics welcome the opportunity to bill for those expensive procedures, and refuse to give opioids to patients unless they agree to become “human pin cushions.”

“One might ask how the situation arose whereby we spend so much of our healthcare capital on a treatment for a common condition that compromises the lives of so many people but seemingly does not work.”

— Jane Ballantyne, MD

One might ask Ballantyne what patients with chronic back pain are supposed to do without injections or opioids. Her editorial provides no answers.

“This (new guideline) will not be the last word on spine injections for chronic back pain, but it adds to a growing sense that chronic pain management needs a major rethink,” Ballantyne wrote.

Earlier this month, the American Academy of Neurology released a new evidence review that found epidural steroid injections have limited efficacy, and only modestly reduce chronic back pain for some patients with radiculopathy or spinal stenosis.

Gretchen’s Journey Into Chronic Pain and Death

By Maria Higginbotham

I write this on behalf of one of my dearest friends, Gretchen Lont, a fellow pain warrior whose spirit I cherished deeply. I made a promise to her to ensure her pain story is told. Gretchen’s last hope was that by sharing her experience, we might alleviate the needless suffering of others grappling with untreated or undertreated pain.

We call ourselves pain warriors, having fought tirelessly since 2016 for the rights of those struggling with painful conditions to receive adequate pain treatment. According to the CDC, over 24% of U.S. adults — 60 million people — suffer from chronic pain, surpassing the combined numbers of Americans afflicted by heart disease, diabetes, and cancer.

Tragically, Gretchen passed away on January 19, 2025 at the age of 59, after enduring years of unbearable undertreated pain. Despite persistent pleas to her doctors, Gretchen’s words fell on deaf ears. Just days before her death, she received a devastating diagnosis: ALS, also known as Lou Gehrig’s Disease.

This story in no way reflects all the beauty and individuality that was Gretchen. It defines her struggles with untreated pain, but there was an entire life in which she lived and loved. Her children and her family were her world.

I only ask that you respect her family’s privacy during this difficult time. She was a bright light that will never be erased from our hearts. I am heartbroken at the loss of a beautiful soul and dear friend.

Before her disability, Gretchen lived life vibrantly. She adored her three sons — Zach, Jordan and Nathan — and cherished every moment with her family, including her father John, her sisters Stacy and Kristen, and brother Michael.

She worked tirelessly to provide for her children and always carved out time for joy and laughter. She lived life to the fullest.

GRETCHEN LONT IN 2019

Gretchen embodied the belief that giving is a greater blessing than receiving. Her generosity knew no bounds, and her radiant smile could light up any room. With a feisty spirit, she was a fierce protector of her loved ones. She found solace in crafting — painting and making jewelry — each piece a testament to her incredible talent.

Animals had a special place in her heart. Gretchen’s social media was filled with adorable animal pictures. She often fed the squirrels and birds in her yard and adopted a special needs cat named Cleo saying, “We’re two damaged bodies just trying to survive, and we’ll do it together.”

Gretchen's journey into pain began with an accident at an upscale restaurant in Tacoma, WA. A spill that had gone uncleaned caused her to slip and fall, resulting in a severe back injury which later required surgery. This injury ushered in years of excruciating pain, followed by joint pain, more surgeries, and a possible diagnosis of Rheumatoid Arthritis at the age of 57.

Desperate for relief, Gretchen explored every alternative pain treatment available, yet none eased her suffering. Living with chronic pain is akin to living with a chronic illness: you feel invisible. On the outside, you might appear fine, but inside your body is screaming in agony.

Eventually, she found a compassionate pain management doctor who, for many years, treated her as an individual. With the help of opioid pain medication, she managed to regain a semblance of life — spending time with her family, painting and crafting, celebrating holidays, and enjoying the beauty of nature. Her passion for art blossomed, allowing her to create stunning jewelry and amazing paintings.

A Wasteland for Pain Patients

Sadly, Gretchen’s doctor, after years of facing scrutiny from medical agencies, decided to retire, joining many other physicians who closed their doors due to the hostile environment surrounding pain management. In 2021, she gave her patients a year’s notice about her plans, in the hope it would be enough time to find new care.

Unfortunately, the state of Washington proved to be a wasteland for chronic pain patients. Most physicians here are unwilling to take on new patients who are on opioid therapy, and those who do will often refuse to continue the opioids and force the patients to try previously failed methods.

Gretchen’s only option was to have an invasive surgery for a pain pump. To qualify, she had to undergo extensive psychological and physical evaluations, which she passed. However, she was then told she had to reduce her opioid dosage by 75%. This drastic cut left her bedridden, trapped in a cycle of agonizing pain.

After months of suffering, the pain specialist told her that her insurance, Medicaid, would not cover the cost of the pain pump or surgery. In desperation, Gretchen asked if her opioid medication could be increased to a dose that would provide some relief from the agonizing pain. Unfortunately, she only received a minimal increase, leaving her to continue suffering in unbearable agony.

On October 3, 2023, Gretchen felt a deep despair settle over her. Bedridden and in relentless pain, she questioned why a person should be forced to suffer this way. There was always a battle to fight -- like finding a doctor willing to provide adequate pain treatment, dealing with pharmacists who were choosing whether or not to fill a valid prescription for medication, and insurance companies not covering prescribed pain treatment.

She felt like a burden, unable to spend time with her family or do any of the things that brought pleasure in life. The pain specialist seemed indifferent to her deteriorating condition. Gretchen made the heartbreaking decision to take all her medications in an attempt to end her suffering. Fear gripped her and she confided in her son, who immediately called 911.

Resuscitated through CPR, the ER team noted that this tragic episode could have been avoided had her pain been managed appropriately. They had seen this happen many times. Gretchen was discharged with the recommendation to consult her pain specialist about increasing her medication.

The following day, during a virtual visit, her pain specialist expressed sympathy and promised to improve her pain management. Yet, hope quickly faded the next day at an in-person meeting. The doctor declined to increase her dosage, and Gretchen continued her downward spiral.

A friend referred her to a new doctor who specialized in both primary care and pain management. This physician was willing to help, but insisted on a cautious approach. They tried various medications, which provided minimal relief, but Gretchen’s health continued to decline.

The years of untreated pain had caused irreparable damage. She was losing 5-8 pounds weekly, struggled with swallowing, and faced increasingly severe breathing difficulties. She was a mere shadow of the vibrant person she had been two years prior.

A New Diagnosis

By late December 2024, Gretchen's breathing worsened, leading her doctor to recommend a visit to the Emergency Department at UW Medical Center for treatment of suspected pneumonia and a neurology consult.

That’s when Gretchen was diagnosed with ALS and learned that the suffering she endured for so many years stemmed from that incurable, painful, and deadly disease.

gretchen 3 days before she passed

It should be known that chronic pain patients often go decades struggling with intractable pain without a definitive diagnosis. Like Gretchen, many of us are diagnosed with a rare disease or medical condition when it’s too late to do anything. 

Admitted to the hospital on January 1, 2025, Gretchen was discharged to home hospice on January 17. Just an hour after returning home, she suffered a coughing fit and anxiety attack. Gretchen had realized she was dying.

I happened to call her at that moment and the only 2 words I could make out were “hospice” and “dying.” She was immediately sent to a nearby hospital, her body frozen in fear; her eyes and mouth wide open, arms outstretched. She stayed like that for just over 24 hours before she stopped breathing.

Long before she passed, Gretchen shared these words with me:

“Please help patients like me who have no options. We did not choose to have medical conditions that cause pain. No doctors will take you if you’re a chronic pain patient. It’s devastating to be in such a vulnerable position and feel abandoned. Our medical system is supposed to provide us with compassionate care and treat us as unique individuals. Instead, pain patients have become pariahs.

I share my story because I want those in power to understand that we are not just individuals suffering in pain. We are family members with loved ones who care for us and have loved ones that we care for. We deserve to live our lives filled with laughter and joy, not confined to a bed, incapacitated, and suffering in agonizing pain. There is an easy answer: treat our pain!

Please stop punishing those who suffer in pain. Our lives matter.”

Gretchen has her angel wings now, flying free from pain — a bright light in our lives whose flame will never be extinguished

Maria Higginbotham is a patient advocate and chronic pain sufferer who has an aggressive form of degenerative disc disease. Multiple surgeries not only failed to relieve her pain, but left her with adhesive arachnoiditis, a chronic inflammation of spinal nerves. Maria has also been diagnosed with Ehlers-Danlos disease and Scleroderma.

RIP Melissa Brooks: ‘It Starts with Pain and It Ends with Pain’

By Ann Marie Gaudon

Melissa Brooks wanted me to tell her story once she was dead. She wanted others in pain to know her experience in trying to access medically assisted death in Canada.

Melissa was in pain -- severe, intractable pain -- and if she met the criteria for Canada’s Medical Assistance in Dying (MAID) program, she’d be able to end her life with dignity and mercy.  Melissa suffered from multiple chronic conditions, was mostly wheelchair bound, and legally blind. Euthanasia is what she desired, but applying for MAID wasn’t easy.

“It starts with pain and it ends with pain. And there’s a bunch of medical system mess-ups in the middle,” Melissa told me.

Melissa was free with her words, so honest and articulate. She had different personas she’d use to tell people about her desire for death, because if she shared how deep her misery was, Melissa thought she’d lose friends. On the days she couldn’t hide her pain, she didn’t interact with people and expressed to me that this was a lonely place to be. Melissa felt that no one knew what she was going through.

“The quickest way to lose friends is to be honest about how much pain you’re in,” she said.

Curiously, once she requested MAID, Melissa felt a newness in her relationships. Her friends now knew they had a limited time to grieve and they no longer had to carry the “nitty gritty” of her for an extended time.

Most of our conversations happened as Melissa went through the strict process that MAID requires for medical assistance in dying to be granted.

I wrote a column about the many difficulties my friend Maggie Bristow had accessing MAID to end her life, after nearly three decades with chronic pain.

Melissa’s struggles with MAID were different. This intrigued me – what is going on here?  Why isn’t there a standard protocol? You meet the criteria and then you are approved. But that’s not what happened.

You need two doctors to assess your application for MAID. Melissa's first assessor pissed her off by repeatedly saying her medical condition was “complicated.”

Of course it was – all MAID cases are complicated.

MELISSA BROOKS AND HER SERVICE DOG, RUBY

“I’m complicated, my case is complicated, my pain is complicated. I think it’s medical BS and I almost fell for it, like I was asking for too much,” Melissa said. “I didn’t feel that complicated until these people were telling me that I was. I have been suffering for decades, my quality-of-life sucks, and I don’t want to do this anymore.”

‘A Moral Dilemma’

In 2016, Canada’s Parliament passed legislation that allows eligible adults to request medical assistance in dying. However, a person’s death had to be “reasonably foreseeable.” This was challenged and Parliament amended the legislation in 2020 to create the current two-track system.

MAID still requires a “grievous and irremediable medical condition,” but a reasonably foreseeable natural death is no longer necessary. If you’re likely to die soon, you’re on track one. If you aren’t and you still want an assisted death, you’re on track two.

With my friend Maggie Bristow, nothing was that simple. It took years for her request to be approved.

Melissa also went through struggles with MAID, with her first assessor questioning her mental well-being. The problem for them was that Melissa was not mentally ill.  The first assessor, not having found any reason to deny Melissa’s request except for her own conscience, did eventually say yes. But that did not come without a price.

“When the first assessor called me well after 8pm – when she knows that is not a good time for me -- she called to assassinate my character,” Melissa said. “She was so mean and made the process so much worse. She accused me of lying and yelled at me over the phone, ‘You’ve put me in a moral dilemma!’”

Poor Melissa was so upset. We talked about how this truly had nothing to do with her and that this particular assessor should not be working for MAID. Not all assessors are equipped to deal with life and death decisions.

This first assessor was so enraged and upset that she told Melissa she would next be seeing “the cream of the crop” assessor -- the one who teaches the others. It was bad news from the beginning, as his treatment was also less than desirable. He sent a psychiatrist to Melissa’s home to assess her mental health. 

The psychiatrist made it a point to tell Melissa that he preferred to begin with a clean slate and never searched or looked up anyone’s history before meeting them. That was a blatant lie. Melissa was an abuse survivor, but that was not the reason she was seeking MAID. The psychiatrist asked questions that only someone who had done a deep dive into her medical history would be asking.

It was all so fake, and Melissa fired this second assessor and his psychiatrist. She was back to having one yes.

‘Killed Me With Kindness’

Next came the third assessor and Melissa was hopeful. She seemed open and progressive. She told Melissa she identified as queer (I’m not sure why or how that would have mattered), but she was kind and that was an improvement.

The process of requesting and receiving MAID should take 90 days. Melissa’s case was taking much longer. In terrible pain and desperate, Melissa tried to take her own life. It did not work, but landed her in the psychiatric ward of her local hospital. I believe this is what sealed her fate with the oh-so-nice third assessor.

“(She) killed me with kindness after not even spending an hour with me, just to tell me she would be saying no,” Melissa said. Now Melissa was in limbo. She had a “yay” and a “nay” from two assessors.

That made Melissa even more frustrated. She met MAID’s criteria of being over age 18 and having an “irrevocable and grievous medical diagnosis” that could not be cured or treated.

“MAID’s job is not to fix the patient,” she told me. “Their job is to say, ‘Yes, they met the criteria’ and to move forward, not ‘This is icky because they’re young and they don’t look like they have a terrible life. They don’t look like they’re suffering or that they want to die.’”

Now Melissa had no help, no guidance, no nothing. She wanted to put in a complaint. But to whom?

A few miserable weeks later, she did get something. It seemed to begin as a urinary tract infection (UTI), which could be quite dangerous for Melissa as she was so physically vulnerable to begin with. Then she started to cough. I asked her if she would call her practitioner for treatment and she agreed, but I saw the writing on the wall.  Her doctor said she had a UTI, plus pneumonia, but agreed with Melissa that this could be treated from home.

You may have already figured out what came next. Melissa did not take the antibiotics she was prescribed, and stopped eating and drinking. She had a “Do Not Resuscitate” order from before she even applied for MAID. Can you blame her? I sure didn’t.

On January 30, while I was working, I had a voicemail message from Melissa telling me that she was going to begin palliative sedation that night and to say a gracious goodbye. She left her friend’s number to call should I need anything.

Melissa Brooks died on January 31, 2025. You might think for a moment that is what she wanted, but it is not. In the end, MAID was an epic fail for her. She wanted to die at home, perhaps with a friend like me, and for sure with her beloved service dog.

I am so sorry Melissa that everyone failed you. My hope is that you somehow find peace in the afterlife. You were one-of-a-kind and I shall never forget you. Blessings.

Ann Marie Gaudon is a registered social worker and psychotherapist in the Waterloo region of Ontario, Canada with a specialty in chronic pain management.  She has been a chronic pain patient for over 30 years and works part-time as her health allows. For more information about Ann Marie's counseling services, visit her website.   

The Best Advice I Got From My Therapist About Chronic Pain

By Crystal Lindell

I started having chronic pain at 29 years old, and the speed at which it upended my life left me with what felt like body-wide whiplash. 

I developed intercostal neuralgia seemingly overnight, which resulted in daily chronic pain in my ribs. 

At the time, I was working two jobs, maintaining an over-active social life, and living on almost no sleep. It’s a lifestyle I tried to maintain well after my body was telling me to stop.  

My mindset had not caught up with the new reality of my body yet, and I paid the price: I kept ending up in either the emergency room or immediate care. My body now had limits, and I was doing my best to ignore them. 

Because the pain was so severe and made me feel so hopeless, around this time I also asked my primary care doctor for a referral to a psychologist. The pain was making me suicidal. I needed help. 

In one of the best gifts of fate, the psychologist I was paired with had a lot of experience in helping people navigate chronic illness. She very likely saved my life. 

The first appointment I went to, I spent the entire hour sobbing about my new reality. 

Eventually, after we started meeting every other week, I came out of the fog, and her advice and guidance were what helped me finally start to see clearly. 

While I’m grateful for her tips about things like keeping a daily gratitude journal, and techniques she shared about how to communicate to my boss and my loved ones about my limitations, there was one piece of advice that helped the most. 

My therapist taught me about activity pacing. 

It sounds so obvious now that I understand the concept, but after living the first 29 years of my life at full speed and only sleeping when I physically could not stay awake a second longer -- pacing was revolutionary for me. 

The Basics of Pacing

In short, pacing is basically approaching activity levels in a more intentional way -- not doing too much and not doing too little. It also means that you don’t wait to rest until you need to. Instead, you rest proactively. 

So, rather than staying awake for 24 hours straight trying to get everything done for my two jobs, I started to stay awake for a more manageable 14 hours and then sleep for 9 hours. After waking up, I learned to slowly ease myself back into activities. 

Because I grew up in a culture where I was constantly told that working well past my limits made me a better person, pacing felt almost illegal. Until my therapist explained it to me, it had literally never occurred to me before that I could rest proactively.  

Making sure I was getting enough sleep made a drastic difference in the severity of my physical pain, and it also helped give me mental clarity for dealing with the shock and challenges of my new body. 

However, it did take me a couple years to fully understand the foundational principle of pacing: It’s not just doing too much that’s a problem, it’s also doing too little. 

Yes, therapy helped me to stop pushing myself beyond my limit, but for about a year after that, I went to the other extreme. I was so scared of aggravating my pain, that I spent every day in the house, doing work from home, and then sleeping – with little else mixed in. 

Around this time I found out that my vitamin D levels were dangerously low – the lowest my doctor had ever seen in a patient. I think it was because I was getting almost no exposure to sunlight for days on end. 

So that is what spurred me to learn that balance goes both ways. I started to understand the importance of doing some activities sometimes, and resting other times, without eliminating either one.

Pacing has become the foundation of my life these days, more than 10 years after I first started having daily chronic pain. It’s a huge factor in keeping me both physically and mentally healthy. 

You don’t have to just take my word for all this though. A small 2021 study showed how helpful pacing can be. 

According to a “Very Well Health” article about the study, the researchers taught participants – who all had chronic health issues – the basics of pacing.

The pacing framework included:

• Recognizing current unhelpful behaviors

• Finding baselines

• Practicing self-compassion

• Being flexible

• Gradually progressing activities

The study found that the pacing results happened fast. Some of the patients who attended a rehabilitation center for issues related to chronic pain and fatigue experienced the benefits of pacing after just two sessions. 

The study also included quotes from the participants talking about how it impacted them. 

“Before going to the programme I was just stuck in a situation where I'd do what work I could when I could…and then suffered for it; and I didn't really think about it the same way as when it's explained to you,” one patient said. “So, whereas I thought I was pacing myself naturally, in a sense I wasn't.”

Indeed, that’s the magic of good therapy. It gives you a new perspective, and if you’re really lucky, it gives you tools that help you live a better life. 

I’m not here to tell you that pacing in our society is easy.. As I’ve said, it took me years to truly implement it into my life. And I still struggle with days when I over do it, or even rest too much. 

Overall though, as a foundational principal, pacing is the most important thing I do to manage my chronic pain. And I think if you try it too, you’ll find out first-hand just how helpful it can be.

A Pained Life: My Fantasy Trip to Nowhere

By Carol Levy

I'm watching TV. An ad comes on for a cruise to a tropical port. It looks so inviting.

At the store I overhear someone describing the “wonderful” trip they recently took to Europe, touring Paris and dining in a real Italian trattoria. Their joy in describing the trip is hard to miss.

For a minute, even two, my mind churns out fantasies of going on a trip of my own. Maybe a safari in Africa or a trip to France to see the Eiffel Tower and eat real French pastry. 

For a moment, my mind flies with the excitement of it, before crashing back to earth

In my mind I can take those trips. Because in my mind, in my fantasies and dreams, I have no pain. I'm just a regular normal person. Then the facts come rushing in, slamming me. What? You’re going to leave the pain behind?

I don't have this fantasy much anymore, after all these decades of living with pain. But, once in a while, I see myself without pain. I'm out in the world. I have a job again, making friends and socializing.

For a fleeting second, I even see myself -- not the old lady I am now -- but 26 again, before the pain started and ripped away any chance of being “normal.”

Then the final slap in the face: You're 72. Twenty-six is long gone, never to return.

So many articles are written abbot how to cope with pain without drugs: meditation, mindfulness, and relaxation techniques. They may work for some of us. And it's great when they do. But they don't work for me because my trigeminal neuralgia pain is not in my body, it’s only in my face.

It's frustrating when I read these articles, many in medical journals or on medical websites, because invariably they don't have relevance for many of us. The advice telling us to exercise more and to not “give in” to the pain, but to do what hurts in order to help our bodies realize we can move more and do more.

That doesn't help for cranial neuralgias, many of the people with CRPS, or the pain associated with lupus, multiple sclerosis and arachnoiditis. The suggestions are as frustrating to me as the ridiculous idea that I can go on a ship or a safari.

I want the pain to go away. I want to be a “normal” person who can do pretty much whatever I want, whenever I want. Even go on a trip. The pain always tells me: No, ain't gonna happen.

I keep waiting for the articles and doctors to finally say, “Here's what we can do to minimize your pain.” Stopping it entirely may be a step too far to hope for.

But please, medical community, stop with the cliches, especially ones that imply it is my fault that I have chronic pain. If I could exercise or think it away, I surely would.

Carol Jay Levy has lived with trigeminal neuralgia, a chronic facial pain disorder, for over 30 years. She is the author of “A Pained Life, A Chronic Pain Journey.”  Carol is the moderator of the Facebook support group “Women in Pain Awareness.” Her blog “The Pained Life” can be found here. 

6 Things to Try If Your Doctor Won’t Prescribe Opioid Pain Medication

By Crystal Lindell

Many doctors are extremely resistant to prescribing opioid pain medication for any reason these days. Whether it’s for post-operative pain, chronic pain or even pain from terminal cancer, patients are finding that doctors shrug their shoulders and tell them to go home and take ibuprofen.

Unfortunately, over-the-counter pain medication is just not effective in many cases, and that can leave patients in desperate situations. 

As someone who’s been navigating my own chronic illness for more than a decade, as well as helping my loved ones with their health issues, I do have some very realistic advice I can offer.

If you ever find yourself in extreme pain, but your doctor won’t give you pain medication, here are 6 things you can try. 

1. Doctors Expect You To Negotiate

Many doctors now have an unwritten policy where they will only give you opioid medication if you ask a certain number of times, especially when it comes to acute trauma like a broken bone or post-op pain. 

Doctors believe that this helps them to make sure that you really need it. 

So just because your doctor tells you no one time, two times or even three times, that doesn’t mean you should just accept the response. If your pain is severe enough that OTC medication is not working, then ask again. And again. Ideally, they eventually relent and will send in at least a small opioid prescription for you. 

This also helps future patients. Many doctors assume that if patients don’t ask repeatedly for pain medication after a surgery then that means that the surgery doesn’t result in severe pain for anyone. By showing them that you need it, you make it more likely for doctors to believe the next patient.  

2. Tell Your Doctor You’re Unable To Work Due to Pain

Unfortunately, under our current financial structures, much of our worth as humans is still tied to our ability to be productive at our jobs. So telling your doctor that you’re in too much pain to work may inspire them to finally send in an opioid prescription for you. 

They do not want you missing work, which could mean you losing health insurance and being unable to pay them. 

3. Threaten To Go to the ER

Another option when your doctor refuses to give you opioid medication is to tell them that you’re going to go to the emergency room then. This will often spur them to send in a prescription.to your pharmacy.

When it comes to something like post-surgical care, many doctors feel like it makes them look bad when their patients have to go to the ER for after-care. 

I have also seen this work for chronic pain as well, especially if you’re in their office when you bring it up. One time, for example, after explaining that I was going to go to the ER because my pain had spiked, my doctor gave me stronger pain medication in his office.

As an aside: Just make sure that if you get something very strong, like a hydromorphone shot, that you also get medication for nausea, like Zofran. While most ERs do this as a matter of policy, sometimes a doctor will skip it if it’s administered in their office. 

This is something I learned the hard way after an in-office hydromorphone shot left me vomiting for more than 24 hours because I wasn’t used to the strength of the medication. The whole thing could have been prevented with some Zofran.

4. Go to the Emergency Room

If telling your doctor that you want to go to the ER doesn’t motivate them to send in an opioid prescription, then the next step is to actually go to the emergency room. 

In my experience, ER doctors will, at the very least, usually give you a dose of pain medication to take on site. That can help you get the pain down to a level where you can at least think clearly and then figure out next steps and/or get some needed sleep. 

Depending on the situation, sometimes you can also convince ER doctors to give you a small prescription for at-home use too, especially if it’s for something like post-op pain or a severe injury.  

5. Consider a Pain Management Doctor 

If you have chronic pain, many times your best option is getting a referral to a doctor who specializes in pain management. 

This is not ideal because pain management doctors tend to be quite different from primary care doctors. That’s because many pain specialists believe they are being watched by the Drug Enforcement Administration. The DEA has no medical expertise, but has targeted hundreds of doctors for what it calls “unlawful” opioid prescribing.  

Because of that, many pain management doctors act more like probation officers than medical professionals, requiring invasive and expensive monitoring like drug tests and pill counts on a regular basis. This means the patient experience tends to be more like being on probation than getting healthcare. The only thing missing is an ankle monitor.

That said, pain specialists are usually willing to prescribe a low-dose opioid if it doesn’t exceed medical guidelines, which could get them in trouble. For many patients, even a low dose can literally be life saving. 

If you can’t get pain treatment anywhere else, then it can be worth it to put up with the draconian atmosphere. 

6. Try Kratom or Cannabis

The two most effective pain treatments you can get without a prescription are kratom and cannabis, although your mileage may vary and their legal status varies a lot by jurisdiction. 

While I am not sure how effective kratom or cannabis is at treating short-term intense pain, like a broken bone, I have personally found kratom to be the only substance I can get without a prescription that helps my chronic intercostal neuralgia pain. I would describe kratom as having an extremely mild opioid effect. 

Personally, I use it by taking a spoonful of kratom powder with a swig of Gatorade, as I find that to be the most effective delivery method. However, there are many options, ranging from capsules to kratom candy and even kratom seltzer. 

I also know many others who have found relief by using cannabis, which is thankfully legal in many places now. THC gummies seem to be especially helpful to anyone who’s new to cannabis use and doesn’t want to smoke. Cannabis dispensaries are also usually staffed with knowledgeable, friendly employees who are happy to guide you to the best option. 

I always say pain will make you crazy much faster than you expect. Within just three days of severe pain, I have seen people openly saying they were ready to die. 

It’s a true shame that in 2025, when effective and cheap pain medication exists, so many people are still left to suffer simply because of opioid-phobia and an overzealous DEA. 

However, that doesn’t mean you should be forced to suffer through pain just because you may not know how to navigate the healthcare system. You do have options. 

And if you’re in a situation where you’re denied pain care that you need, I hope you’ll use it to inspire more compassion in yourself. Pain treatment is a human right, and the more people who support it, the more likely we are to get it. 

How I Set Up My Daily Life To Manage Chronic Pain

By Crystal Lindell

I’ve been dealing with severe chronic pain for more than a decade now, most of which is due to the intercostal neuralgia I have in my ribs. So, at this point, my entire life is basically set up to accommodate that. 

While some people may read that paragraph and assume that I have a sad life consumed by pain, I prefer to think of it as my way of fighting back. 

By planning for and accepting my pain, I can live without added stress and burdens. As a result, I don’t let my pain lead – instead I get to lead my pain. 

My daily schedule is flexible, so that I can adjust it to my pain as I’m able, doing more when I can and resting when I need to. I keep things as stress-free as possible because stress escalates my pain. And I try to work with my body instead of against it. 

So what does that look like on a typical day in my life?

Well, I usually wake up for the first time at around 4:30 am to the sound of my orange cat Goose screaming at the top of his lungs because he’s hungry. I take a second to see how much my back hurts today and decide the best method for getting out of bed. My goal is always to get out of bed without needing help from my fiancé Chris.

Then I go to the kitchen to feed Goose and our other three cats – Princess D, Basil, and Goldie. I love them, so they get wet food before I even eat my own morning breakfast: Two Advil; one pain pill; a spoonful of kratom washed down with orange Gatorade; and a cup of hot coffee. 

I go to sleep at about 8 pm most nights, so I check my phone first thing to catch up on any messages I get from loved ones overnight. I also throw the news on our TV so I can catch up on the slew of horrible things that likely happened in the world overnight. 

After “breakfast” I lay out a yoga mat and grab my pillow so I can lay on the floor for a bit as the news continues in the background. There’s something about laying on the ground that helps alleviate the vicious back pain I’ve been dealing with ever since throwing out my back a few weeks ago.

Anytime I try to skip this new floor ritual, I regret it, so I have now built it into my daily schedule to stare at the ceiling multiple times a day. Our black cat Basil always curiously crawls around my head wondering what I’m doing in her realm of the house – the floor. 

Then I get the food dishes ready for the outside cats that I take care of and run those outside to help them survive the long, cold Midwest winter. 

Depending on how busy my day ahead is, I’ll then sometimes lay down for another hour or so while letting my morning medication cocktail kick in. 

When I get back up, I make another cup of coffee, which usually ends up sitting half-finished on our coffee table until it gets cold and I give up on it. Despite the fact that this happens almost every day, I still keep making that second cup of coffee thinking today will be the day I finally finish it.

I don’t work full time in large part due to my health, so I don’t have to get ready to leave the house most days. But that doesn’t mean I just sit around watching TikTok all day. I make ends meet by doing freelance writing work, and by running an online Lego store with Chris via a website called Bricklink. 

If I have writing assignments due, I start mulling that over in my brain, while simultaneously checking in on our Bricklink store to see if any orders came in overnight. Chris handles most of the packing and shipping, but if we are especially busy, I jump in and help pull orders. 

Because my rib pain gets worse the longer I’m awake, I also try to cook any food for the day in the morning because cooking is a very draining task in and of itself. That means I’ll often start a pot of soup or a casserole by 9 a.m. Personally, I actually like dinner food for breakfast, so depending on how long that takes to make, I’ll generally have a serving to start my day. 

I also try to make double batches of any meals, and then freeze them in a portion-size silicone ice cube tray to essentially make my own homemade frozen dinners. That way, when I’m having an especially bad pain day, I have quick meal options. 

After cooking, I head to my couch and figure out the rest of my plans for the day.

This time of year, when the temperatures here in northern Illinois are almost always below freezing, I do a lot of life from my couch under a heated blanket, with our long-hair tortoiseshell cat Princess D on my shoulder. 

Sometimes that means I even do some writing directly on my phone, if I’m in too much pain to pull out my laptop. 

After a few hours of work, I usually have another round of ibuprofen, prescription pain meds, and kratom in the afternoon with my lunch, which is often another serving of whatever food I made that morning. 

CRYSTAL AND PRINCESS D

Then I’ll try to shower. I don’t know if it’s because of the way that I have to move my arms to wash my hair or because there’s just a lot of standing involved, but showers genuinely wipe me out, so I have to set aside time to both take a shower and then recover for a bit on the couch.  After I get dressed, I have to lay on the floor again for about 15 minutes for my back. 

Most days I wear extremely comfortable clothing because I can’t risk any additional discomfort to my ailing body. So if I’m staying home for the day I’ll just directly opt for pajamas, but if I’m visiting my mom — who lives a couple blocks away — I’ll throw on some lounge pants and T-shirt.

In both cases though, I’ll also throw on some compression socks just to keep my feet from swelling up because of all the ibuprofen I take. 

I’ll also throw on some very light makeup just to give myself a little pick me up. Then, I will often run over to my mom’s house to drop off some food for her and my grandma to eat for dinner.

After I get home, I’ll spend time catching up on social media, which helps me feel like I have a social life despite the fact that I spend most of my time at home. 

I also am still trying to avoid catching COVID because I don’t want to risk adding to my health issues, so I limit my time at large social gatherings as much as possible. That means most of my communication with loved ones is via text and the occasional FaceTime call. 

So I take some time in the later afternoon on the couch, while Chris rubs my feet, to catch up with people I care about while also playing the daily New York Times Connections and Wordle Games. 

Part of running the Bricklink store means that, aside from pulling orders, our other big task is adding Lego parts to our inventory, so I try to work on that in the evening before feeding the cats dinner and then winding down the night. 

Then, like I said, I’m in bed by about 8 pm because dealing with chronic pain is exhausting. So after one last round of Advil, pain medication, and kratom, I’ll get under the heated blanket in our bed and scroll social media on my phone for a bit before falling asleep with our tabby cat Goldie cuddled up next to my head.

I could see how a healthy person might read this day-in-the-life story and come away thinking I have a pretty plain existence. But I love spending my days in my cozy, small-town apartment, cuddling my cats on-demand and running an online Lego store with my fiancé. 

It’s back when I was trying to pretend that pain didn’t exist that I was miserable, constantly overdoing it, and ending up either in the emergency room sobbing in pain, or at home awake all night with pain-somnia. 

Pain forces you to go with the flow, to embrace the world as it is and work with it, instead of against it. It’s only when I accepted that fact, that I found true happiness. 

Note: Pain News Network makes a small commission on any Amazon links in this article. 

Why Life With Chronic Pain Makes Every New Ache Extra Terrifying

By Crystal Lindell

Late Sunday night, while putting freshly cleaned sheets onto my bed, I twisted a little weird and threw out my back.

By Monday morning, the pain was so debilitating that I was sobbing as my fiancé tried to help me out of our bed. But beyond dealing with the immediate physical pain, I was also terrified of the future.

As a chronic pain patient, every time I get any new illness or affliction I worry that it will become what the rib pain I woke up with in 2013 became: Permanent. 

When you develop chronic health issues of any sort, you lose one of the healthy population’s greatest luxuries: The ability to assume that you’ll eventually get better. 

Thankfully, I seem to be recovering from this flare up of back pain. Three days after the initial onset, I’m able to lift myself out of bed, and even do some light cooking in the kitchen. 

This is the first time I’ve ever experienced any type of severe back pain like this though, and I had been very stressed that my back would never recover.

This isn’t the first time I’ve faced this fear. 

When I had a bad case of COVID in 2022, I spent the first few nights awake with the most severe cold-related muscle aches I’d ever experienced.

In my fever state, I frantically Googled to see if this was a symptom that could become permanent. I was petrified that my body was just broken like this forever. Thankfully it wasn’t, but I know all too well that there’s no guarantee of recovery when it comes to the human body.

It’s not just my health I worry about either. 

Anytime a loved one tells me about a chest cold, some new joint pain, or any type of new health issue, I panic that their body will never recover. Or worse, what if it kills them?

This fear has only been made worse since 2020, when COVID, which first presents as cold symptoms, started spreading. In the years since it has killed multiple people I knew. 

Now anytime anyone I know develops so much as a sore throat, I worry that they’re going to die.

I keep this to myself because there’s nothing to be gained by spreading my worry to them, but I worry nonetheless. I know firsthand how fragile our bodies are, how delicate our health truly is. I am all too aware of the fact that any of us can lose it at any time. 

As I've been enduring the new back pain all week, cursing myself for taking my ability to bend over for granted, I’ve thought a lot about my late-father, who died from COVID in 2022. 

I have vivid memories of him throwing his back multiple times throughout my childhood. Now that it has happened to me, I’ve realized that I didn’t spend nearly enough time asking him how he coped with it, and then seemingly got past it. 

My dad’s back was so bad that he was walking with a cane at age 35, when my younger brother was born in 1989. But the cane was gone within a few years and I don’t remember him needing it again after that. 

Talking with my brother this week, he told me our dad blamed his back pain on driving a truck for a living, a profession he eventually gave up so he could pursue computer programming. So, I assume it was the career change that alleviated his back pain. But now that he’s dead, I’ll never really know for sure how he healed his back, or if he even really did.

My late-grandfather on my mother’s side also spent decades of his life battling seemingly untreatable back pain. He passed away when I was a toddler, but stories about his back pain continued long past his death. 

Now, as an adult, I suspect he was one of the links in the genetic Ehlers-Danlos chain that we now know runs along my mom’s side of the family. We both battled the same condition, but he’ll never know that.

Pain is always bad, but as our bodies age in the same ways our parents, and their parents before them have, it does have one small, silver lining: It can help us connect to our ancestors in new ways, helping us more fully grasp the lives they lived before us. 

After battling this back pain flare up this week, I have a new appreciation for how much pain my dad and my grandfather must have endured due to their back problems, and a more fully developed sense of empathy for their troubles. 

So while I will continue to worry that every new health issue will become permanent, including my new back pain, I can take small comfort in knowing that even if that’s the case, enduring it just makes me part of a long line of my ancestors who’ve endured the same before me. 

Human beings suffer, but when we suffer together, it does tend to alleviate our sorrows ever so slightly. 

The Most Popular Pain News Network Stories of 2024

By Crystal Lindell

Looking back at 2024, there was a lot of news to cover about chronic pain and illness. Access to opioids and new pain treatments were two issues that readers were most interested in over the last year. 

Below is a look at the top 6 most widely read articles that PNN published in 2024, a year that saw us reach nearly 550,000 readers around the world.

Kamala Harris’ Stepdaughter Draws Backlash for Advocating Pain Treatments

Our most widely read article — by far — discussed Ella Emhoff, the 25-year old stepdaughter of Vice President Kamala Harris, who was running for president at the time. 

Emhoff revealed on social media that she has chronic back pain and shared a list of ways that she tries to address it, including alternative treatments such as ketamine, exercise, and an anti-inflammatory diet. 

Emhoff’s lengthy list of potential treatments got some push back from our readers, in part because she never mentions opioids. Other readers were hopeful that Emhoff could help draw more attention to an issue that most politicians ignore.

“How much her stepmom is aware of her stepdaughter's trials & tribulations is an unknown, but there is a tiny ray of hope that she - the candidate - has at least some direct awareness of an issue that effects millions of Americans but remains unaddressed by anyone,” one reader commented.

Read the full article here.

New Mothers Lose Custody of Babies After False Positive Drug Tests

This article was about hospitals routinely giving urine drug tests to new moms — and then reporting them to child welfare agencies when the tests show false positives. One mother wasn’t allowed to take her newborn baby home because she ate a salad with poppy seeds and then falsely tested positive for codeine.

The article was based on an investigation by The Marshall Project, which interviewed dozens of mothers, medical providers, toxicologists and other experts to report the story. 

“People should be concerned,” Dr. Stephen Patrick, a neonatal researcher told The Marshall Project. “This could happen to any one of us.”

Read the full article here. 

DEA Finalizes More Cuts in Opioid Supply

For the 8th consecutive year, the U.S. Drug Enforcement Administration reduced the amount of opioid pain medication that drug makers can produce in 2024, ignoring complaints from thousands of patients that opioids are already difficult to obtain and many pharmacies are out of stock.

This article received more reader comments than any other in 2024.

“This is absolutely criminal, the DEA dictating how much painkillers are available? How much more do legitimate chronic pain sufferers need to suffer? Now I know why I couldn’t get my pain medication. This really pisses me off and it should piss off everybody!” one reader posted.

Read the full article here.

Many Doctors Hesitant to Accept Patients Using Opioids or Cannabis

This article delved into research at the University of Michigan showing that many primary care doctors are reluctant to accept new patients who use either opioids or cannabis.

Of the 852 physicians surveyed, nearly a third (32%) said they would not accept a patient using opioids daily, while 18% felt the same way about patients using medical cannabis.

“This lack of access could inadvertently encourage patients to seek nonmedical treatments for their chronic pain, given that relief of pain is the most commonly reported reason for misuse of controlled substances,” said lead author Mark Bicket, MD.

Read the full article here.

90% of Pain Patients Have Trouble Filling Opioid Prescriptions

This article looked at the results of a PNN survey of over 2,800 patients with an opioid prescription. 

We found that nine out of ten patients experienced delays or problems getting their prescription filled at a U.S. pharmacy. Even after contacting multiple pharmacies, nearly 20% were unable to get their prescription filled,

“My medication helps my pain be at a level I can tolerate. When I can't get it, I honestly feel like ending my life due to the pain. I wish they'd stop to realize there are those of us with a legitimate need,” one patient told us.

Read the full article here

‘Smart Opioid’ Relieves Pain with Lower Risk of Overdose

This article was about an experimental form of hydrocodone that relieves acute pain without the risks of traditional opioids. 

An early stage clinical trial by Elysium Therapeutics found that its “SMART” formulation of hydrocodone releases therapeutic levels of the pain medication when exposed to a digestive enzyme in the small intestine.

If a patient takes too high of a dose, the drug inhibits production of the enzyme, which slows the release of hydrocodone. In theory, that will reduce the risk of abuse and overdose. 

“I wonder how soon this might be available to the public by prescription? Our country desperately needs more pain control options,” said one reader.

Read the full article here.

We hope you enjoyed reading PNN in 2024 and found our stories informative and helpful. We look forward to continuing our coverage of chronic pain and other health issues in 2025. 

Unlike many other online news outlets, we don’t hide behind a paywall or charge for subscriptions. Pain News Network depends on reader donations to continue publishing, so please consider making a tax deductible donation to PNN today.

Can you chip in just $10, $25 or $50 to help keep our website and newsletter free for everyone?

A Pained Life: How Are You Feeling?

By Carol Levy

When I meet someone on the street, we do the perfunctory, “Hi, how are you?” and the expected reply, “Fine thanks. And you?”

If it's a really good friend, we may start to have a true conversation about how we really feel: “Well, you know I've been going through a tough time lately.”

The friend may nod her head in understanding and say, “Oh I'm so sorry. Let's talk about it.” And then we do.

It’s different when I'm at my neurosurgeon or neurologist's office. When the doctor enters the exam room, he’ll usually say, “Hi Carol, how are you?” I reply, “Fine thanks. And you?”

My question to him is ignored. Unlike my friend, his response is not to ask, "No, Carol. How are you feeling? How is your pain affecting you?”

Instead, we go directly to clinical questions like, “Has your pain changed in any way?” or "Are the medications helping you any?”

In my last column, I wrote about wanting doctors to be able to feel what we feel, and to understand what it’s like to have the levels of pain that we endure. Too often, their words and actions indicate they truly don't understand or care.

A few days after I wrote that column, I was in my family doctor's office. We did the “How are you?" thing. He then asked me why I was there.

"I saw some bad blood work results on another doctor's patient portal,” I said. “It's been 2 months. I assumed she didn't call me because the results were good. But now that I saw them, I want to know what they mean." 

“Well,” he started off, “We see thousands of patients and we can't remember to follow through on all of them. You should have called her." 

If that was intended to make me feel small, he succeeded.

“Yes, your cholesterol is terrible You have to take statins,” he said. I told him I didn’t like statins. He didn't ask me why, but warned, “If you don't, you'll have a heart attack.”

My life has been hard, the chronic pain making it a gazillion times harder. I am virtually alone, which makes my life worse. “I don't have an interest in extending my life,” I said. 

I didn't say that to get sympathy. It's my reality. I did, however, expect a response --- a grimace, a nod of the head, or some words of concern or care. None were forthcoming. Instead, he ignored my comment.

When I asked about the risks of statins, he ignored that too, repeating what seemed like a scare tactic: “You'll have a heart attack.”

Had he heard and listened to my words, he would have realized that was not going to have an effect on me.

I had a few other issues. Each one was met with a quick one or two-word answer. I asked him for prednisone, a steroid, as it had previously helped my sciatica. “No,” was his response.

I explained how prednisone helped me before, and that I wanted some in the house for the times when the sciatica gets bad. “I don't want you taking a steroid every day,” he replied.

I hadn't asked or indicated that I wanted to take it daily. He just came to his own conclusion. I explained again that I only wanted it for the “just in case” days. Unhappily, based on his expression, he agreed.

Then the appointment ended. I turned away for a second to get my purse.  When I turned back, he was out the door. Without even a goodbye.

Not once did he ask, “How are you? How are you emotionally? How are these issues affecting you? How are you doing with your pain?”

As I thought about his indifference to me, a person with emotions and feelings, I thought about all of the doctors I’ve seen since my trigeminal neuralgia and chronic pain started. Sadly, I could only think of two out of 20 or more who actually cared about how I was, the emotional, psychological me.

I know every doctor, like every person, has felt what I felt. Not necessarily the depths of despair some of us feel about having pain, or the fear that we have on a good day that the pain is just lurking around the corner. No one is immune from those thoughts.

So many articles have posited that those of us with chronic pain have psychological issues stemming from prior events, such as childhood trauma, that caused our pain and disabilities. 

How am I feeling, doctor? Ask me. It may help you to understand me, my pain, and my other medical issues. And, just by asking, you may be able to help yourself be a better doctor.

Carol Jay Levy has lived with trigeminal neuralgia, a chronic facial pain disorder, for over 30 years. She is the author of “A Pained Life, A Chronic Pain Journey.”  Carol is the moderator of the Facebook support group “Women in Pain Awareness.” Her blog “The Pained Life” can be found here. 

Brain Stimulation May Prevent Chronic Pain Before It Starts

By Pat Anson

Transcranial magnetic stimulation (TMS) is a noninvasive procedure that uses magnetic pulses to stimulate nerve cells in the brain. TMS is typically used to treat depression, but is increasingly used off-label to relieve chronic pain conditions such as migraine, fibromyalgia and peripheral neuropathy.

Research recently published in the journal PAIN suggests that TMS may also be useful in preventing pain before it even starts.

A team of international researchers gave 41 healthy volunteers a 5-day course of either repetitive transcranial magnetic stimulation (rTMS) or sham treatment. Both targeted the left primary motor cortex, a part of the brain that controls movement.

After the fifth and final session, all of the volunteers had an injection of nerve growth factor into their cheeks to induce prolonged pain. For the next two weeks, participants kept diaries of their jaw pain, jaw function and muscle soreness.

“We found that a five-day course of rTMS before pain onset has the potential to interrupt the transition to chronic pain,” said lead author Nahian Chowdhury, PhD, Head of Neurostimulation at the NeuroRecovery Research Hub at the University of New South Wales in Australia.

“We were looking to see what the experience was for participants who had received the rTMS, versus what happened for those who had received the sham. Those people who had received active rTMS experienced lower pain on chewing and yawning than those who received the sham.”

Chowdhury and his colleagues also found that two measurements of brain activity -- Peak Alpha Frequency (PAF) and corticomotor excitability (CME) – seemed to moderate pain whether participants received rTMS or not. This suggests that monitoring PAF and CME may be useful in predicting each individual’s pain resilience.

“Regardless of whether people received the active treatment or sham, our analysis showed that those with faster PAF and higher CME on Day 4 had lower intensity future pain,” Chowdhury said in a news release from NeuRA, an Australian medical institute where he is a research fellow.

This is the first study to show that rTMS can have a protective effect against chronic pain. More research is needed, but the findings open the door for preventative treatments for those at high risk of developing chronic pain.

​“Whilst chronic pain is a significant problem, the current interventions are usually only applied once the pain is chronic,” Chowdhury said. “This research shows in some situations – such as for people undergoing a surgery known to be painful or often leading to chronic pain – there is promise from preventative treatments that may be able to stop chronic pain before it begins.”

PNN Columnist Madora Pennington, who has Ehler-Danlos syndrome, tried TMS therapy and found it eased her pain, depression and anxiety.

“Since having TMS, I notice that my body is less sensitive to touch,” she wrote. “It does not hurt as much to be poked at or pressed on. The extra comfort TMS has given me, both mentally and physically, is a lot for someone with medical problems like mine that are so difficult to treat.”

A Healthy Diet May Ease Chronic Pain

By Pat Anson

We’ve all been told that eating a healthy diet and watching our weight are essential to good health.

What you may not know is that healthy eating can also reduce the severity of chronic pain, even if you are overweight or obese.

That’s one of the key findings from an Australian study that found a healthy diet was linked to less pain, especially among women, regardless of body weight.

"It's common knowledge that eating well is good for your health and well-being. But knowing that simple changes to your diet could offset chronic pain, could be life changing," said Sue Ward, PhD, a researcher at the University of South Australia and lead author of the study published in the journal Nutrition Research.

"Knowing that food choices and the overall quality of a person's diet will not only make a person healthier, but also help reduce their pain levels, is extremely valuable."

Warn and her colleagues analyzed data from 654 Australians who were surveyed about their health, fitness and eating habits. Over two-thirds were considered overweight (36%) or obese (35%), and had high levels of body fat (adipose tissue).

The participants’ diets were then compared with the Australian Dietary Guideline, which emphasizes the consumption of vegetables, fruit, lean meat, fish, legumes/beans, and low fat dairy products.

The researchers found that diet quality works differently in men and women. Women with better diets had lower pain levels and better physical function, an association that was much weaker for men.

Why Healthy Food Reduces Pain

It’s the anti-inflammatory and anti-oxidant properties of healthy food that appear to reduce pain.

"In our study, higher consumption of core foods — which are your vegetables, fruits, grains, lean meats, dairy and alternatives — was related to less pain, and this was regardless of body weight,” said Ward. "This is important because being overweight or obese is a known risk factor for chronic pain.

The findings are good news for people with pain who may struggle with their weight but are sedentary and unable to exercise. Having a few extra pounds will not inhibit the pain-reducing effect of a healthy diet.

“Despite high levels of adiposity in the study population, and the potential for excess adipose tissue to contribute to inflammation, risk for pain, and impact on physical function, there was limited evidence for adiposity mediating relationships between diet quality and pain or physical function,” researchers concluded.

“Recognizing dietary intake as a relevant aspect in assessing and managing pain holds importance in the context of overweight and obesity. In situations where long-term weight loss may not be feasible, attainable, or even desirable, people may show a greater inclination to adopt healthful dietary modifications that could potentially impact their pain.”

The research adds to a growing body of evidence suggesting that high fat Western diets can make pain worse. A recent study found that foods high in saturated fat and low in fiber can trigger an immune system response that can lead to rheumatoid arthritis (RA).

High fiber diets reduce the risk of obesity, diabetes and cardiovascular diseases, while promoting the growth of healthy bacteria that slow the progression of RA and reduce joint pain.

What Qualifies Someone as Disabled?

By Crystal Lindell

There’s a common question in the disability community about what qualifies someone as “disabled.”

My advice to anyone considering this question about themselves is this: People who are not disabled do not sit around contemplating whether or not they are disabled. 

So, if you are wondering if your health issues qualify you as disabled: They do.  

A lot of Americans have a rigid idea of “disability” based on how it’s often portrayed in popular culture. The idea is that “real” disabled people use something like a wheelchair, a walking cane, or a walker. Those Hollywood props are what qualifies someone as legitimately disabled. 

But in real life, that’s not true. Disability is often gradual, slowly chipping away at our abilities – but taking them away nonetheless. Which means it can be hard to know when we’ve crossed the threshold into fully disabled. And we may arrive there without so much as a walking cane. 

In truth, it took me years to fully grasp this about my own diminishing health. 

My pain often makes it so that I cannot leave the house, even with pain medication. Grocery shopping trips leave me exhausted, assuming I even have the energy to push through that day’s pain to navigate the store in the first place. I am on daily medications, I put off showers because they are too difficult for me to handle, and I often cancel plans last minute when my body decides to be uncooperative. 

Yet despite all of that, I still did not know if I should consider myself "disabled."

Over time though, I have come to realize that my health problems impact so many aspects of my life, that of course I am disabled. 

After we decide to take on the label of “disabled” for ourselves, we often meet the next hurdle: pushback from loved ones and strangers who bristle at the distinction. 

There’s also a common sentiment among patients with chronic illness where they think if they meet some imaginary threshold of disabled, then finally people will start to accept their limitations and maybe even show some sympathy. Unfortunately, that is often not the case. 

When it comes to health issues, you will never find validation from others. There is no level of mobility aids or level of diagnosis you can get where people who’ve dismissed your health issues in the past will suddenly start to accept them. 

That’s in large part because when people interact with a disabled person, it requires them to contemplate the fact that their own body could eventually fail them one day. 

Some people choose to hold space for that realization in themselves and then express empathy. But others try to reject it, choosing instead to accuse the disabled person of being overdramatic. That’s because they don’t want to consider just how vulnerable our human bodies really are.  

I’ve heard people dismiss diagnosed cancer patients as “hypochondriacs” for complaining about their symptoms. I’ve seen people claim that POTS is not a real disability, despite the fact that it’s often debilitating and life-altering. And I’ve heard people tell loved ones not to use a wheelchair when they need it, because it might make them “give up.” As though we are ever allowed to give up in our bodies. 

Personally, I think of the time I sprained my ankle back in high school. At the time I was working at Walmart, and I went into work despite the severe pain, swelling and bruising on my ankle. Unable to put any weight on it, I used one of the store’s electric mobility scooters to get around the store during my shift. 

A co-worker felt the need to come right up to me and tell me that I shouldn’t be using it because I should be saving the scooters for people who “really” need them. Apparently being unable to walk did not qualify me. 

My advice here is that other’s opinions of your body are irrelevant. They don’t know what it’s like to live with your symptoms, so it doesn’t matter if they accept the label of disabled for you or not. All that matters is that you accept whatever you label you decide to use. 

And, like I said, if you’re wondering if you are “disabled” you probably are. And that’s okay. Now that you’ve named it, you can get on with the noble work of finding new ways to live with it.

CrossFit Training May Reduce Need for Pain Medication

By Athalie Redwood-Brown and Jen Wilson

Though CrossFit is often seen as a sport for the super fit, that shouldn’t put you off from trying it. CrossFit is designed to be accessible to everyone, with scalable workouts suited for all ages and abilities, embodying its principle that the needs of elite athletes and beginners differ only by intensity, not kind. By combining strength and aerobic exercise, CrossFit can be an effective way of improving functional fitness, muscle strength and cardiovascular health.

But if that’s not enough to convince you, our latest study suggests CrossFit’s benefits for physical health may even potentially reduce the need to use prescription drugs in people living with long-term conditions. This may offer an alternative to traditional medication-based treatment for a range of health conditions, as well as potentially easing the demand on healthcare services.

To conduct our study, we recruited 1,211 people from the UK who did CrossFit. Participants ranged in age from 19-67 – though the majority of participants were in either the 30-39 (38%) or 40-49 (26%) groups. Participants were asked about their health, what prescription drugs they took and any changes in their prescriptions since starting CrossFit.

Of the 1,211 participants, 280 said they took at least one prescription drug to manage a health condition prior to starting CrossFit. Some of the most common health conditions in question included anxiety and depression, asthma, high blood pressure, type 2 diabetes and chronic pain.

Fewer Meds and Doctor Visits

We found that 54% of participants who’d been taking a prescription drug before starting CrossFit said they decreased their dosage after starting. Among this group of 151 people, 69 reported stopping their medication entirely, while the remaining 82 said they had cut their prescription dosage by more than half. These improvements happened primarily within the first six months of training.

Younger participants, specifically those aged 20 to 29, were more likely to reduce their medication. In this group, 43% reported cutting their prescription dosage by more than half, and 27% stopped needing to use a prescription drug altogether (compared to 29% and 25% respectively across all age groups).

We also found that 40% of all participants said they required fewer visits to the doctor after starting CrossFit.

For people with long-term health issues such as chronic pain, CrossFit helped many manage their symptoms. Our study found that of those participants who reported taking painkillers prior to starting CrossFit, particularly to manage arthritis or back pain, over half reduced their medication.

Some even postponed or cancelled surgeries for joint or muscular issues due to the strength and fitness they had gained after starting CrossFit. Of the 71 people who reported cancelling or postponing surgeries, 55% said it was because their symptoms improved, while 31% actually reported they no longer needed surgery at all.

While our study can’t directly prove that CrossFit caused these changes, the effects that CrossFit has on so many aspects of health may help explain why regular exercisers saw a decrease in their prescription drug use.

First, CrossFit is of course beneficial for physical fitness. Improvements in areas such as cardiovascular fitness and metabolic health may help in managing chronic conditions such as type 2 diabetes and high blood pressure.

Second, because CrossFit is often done as a group in a gym setting, it fosters a sense of community, team spirit and support. This sense of community may enhance mental health and wellbeing. Exercise also releases endorphins – chemicals in the brain that boost happiness and decrease pain. These two factors may help explain why a number of the study’s participants reported using fewer antidepressants after starting CrossFit.

Third, the fact that CrossFit’s combination of strength, aerobic and functional exercises helps enhance muscle strength and endurance can alleviate pressure on joints and reducing pain. The high-intensity nature of CrossFit also promotes the release of endorphins which can alleviate discomfort and enhance physical resilience, leaving participants feeling more empowered and uplifted.

As well, CrossFit emphasises movement patterns and mobility, which can help improve flexibility and reduce stiffness. All of these factors might help explain why some of the participants who’d suffered with chronic pain prior to starting CrossFit relied less on painkillers after six months of training

Nonetheless, this study has some limitations to note. The data relies on self-reported information, which can lead to biased results as participants may not accurately remember their prescription use or be influenced by their feelings about CrossFit.

Additionally, the study didn’t track other lifestyle changes participants might have made, such as diet modifications or other forms of exercise. So more research is needed to understand the full picture. Nonetheless, our findings provide promising evidence about the benefits of CrossFit that could contribute to reducing the strain on healthcare services.

Athalie Redwood-Brown, PhD, is a Senior Lecturer in Performance Analysis of Sport at Nottingham Trent University. She also operates a Strength and Conditioning facility with her husband.

Jen Wilson, PhD, is a Senior Exercise and Health Practitioner at the Sport and Wellbeing Academy at Nottingham Trent University. She is also a Sports Therapist and Strength and Conditioning Coach.

This article originally appeared in The Conversation and is republished with permission.