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.

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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.

7 Practical Gift Ideas for People with Chronic Pain

By Crystal Lindell

Whether you’re looking for gift ideas for a loved one with chronic pain, or you’re looking for some ideas for your own wish list, we’ve got you covered. 

I’ve been living with chronic pain for more than 10 years now, and below is a list of some of my favorite things that would also make great gifts for the person in pain in your life. 

And don’t worry, it’s not a bunch of medicinal stuff. Being in pain doesn’t represent our entire identities. The list below is a lot of fun items that would be great for anyone on your list, but that also are especially great for people with chronic pain.

There’s also stuff for every price range, so you’re sure to find the perfect holiday gift! 

Note that Pain News Network may receive a small commission from the links provided below. 

1. Heated Blankets

I put heated blankets first on this list for a reason – they are truly invaluable if you have chronic pain. Even if you live in a warm climate, they can be great to use if people you live with want the AC on the high side. 

There’s just something that’s both cozy and comforting about curling up with a blanket that literally warms you up. I can’t recommend them enough, both as a gift and for yourself. 

I personally loved this Tefici Electric Heated Blanket Throw so much that after getting one for my house, I literally ordered 4 more so I could give them out as Christmas gifts to my family. They all loved them too. And so did their pet cats! 

Find it on Amazon here: Tefici Electric Heated Blanket Throw

The Tefici was actually my intro to heated blankets. After purchasing one for my living room, I was hooked. So I leveled up to this Shavel Micro Flannel Heated Blanket. 

It was a little more expensive than the heated throw, but I got it in 2021, and it’s still going strong. We use it in the bedroom every single night during our cold Midwest winters, and I can’t imagine sleeping without it. It offers more heat settings than the throw, and it can stay on for up to 9 hours. The heating mechanism is also more steady than the throw, so it doesn’t feel like it gets too hot overnight. 

Find it on Amazon here: Shavel Micro Flannel Heated Blanket

2. Home Coffee Machine

One thing about chronic pain – or really any sort of chronic illness – is that it makes it difficult to leave the house some days. But that doesn’t mean you have to give up your Starbucks-style coffee. 

With a home espresso machine, and a milk frother it’s really easy to create very similar drinks at home – and they’re much cheaper than Starbucks. 

I’ve personally been a fan of Nespresso machines for years now and I recently got my sister into them as well. Assuming the person you’re buying for likes coffee, and that they don’t already have a Nespresso, getting them one or a related accessory like a frother as a gift can be a really fun idea. 

Plus, then they’ll lovingly think of you every morning when they use it! 

Find it on Amazon: Nespresso Vertuo Pop+ Coffee and Espresso Maker by Breville with Milk Frother, Coconut White

3. Sound Machine

A lot of people with chronic pain have trouble sleeping, but both me and my partner have realized that having some white noise in the background can really help our brains relax overnight. 

There are a lot of options out there, but a basic one at a lower price point is all you really need. I got him the EasyHome Sleep Sound Machine last year for Christmas and we both love it! It now has a permanent place on our bedroom dresser. 

It has 30 Soothing Sounds, 12 Adjustable Night Lights, and 32 Levels of Volume. We use it all winter when it’s too cold to sleep with the fan on for background noise. 

Find it on Amazon: EasyHome Sleep Sound Machine

4. Pajama Pants

As someone with chronic pain, I honestly spend more days in pajama pants than I do in regular pants. And not only do I love wearing them, I also love receiving them as a gift – especially novelty ones. 

My partner is a huge fan of Lord of the Rings, so I got him these Lord of The Rings Men's PJ’s last year for his birthday, and he wears them at least once a week. 

And quick note: If you’re purchasing pajamas as a gift, I always recommend sizing up to make sure they’re super comfortable. 

Find it on Amazon: Lord of The Rings Men's Sleepwear

5. Streaming Devices

There are a lot of streaming devices you can use to connect your TV to the internet, but we’ve had Rokus in our house for years now, so I can personally recommend them. 

We specifically love that they offer this really great search feature, where if you search on the Roku homepage for a movie or TV show title, it will tell you which one of your streaming services offer it, and even which ones have it for free! So no more scrolling in an out of each streaming app trying to find the movie you want to watch. 

As an added bonus, you can also use a feature in the Roku App as a remote if you lose yours, which can come up a lot for people who might be dealing with chronic pain-related brain fog. 

Find it on Amazon: Roku Express 4K+

6. Art Supplies

Having chronic pain means I’m always on the lookout for low-key activities I can do at home, so over the years I’ve gotten really into artistic pursuits. But if you’ve ever tried to start a new hobby, you know that getting all the supplies can be half the battle. 

But that also means that art supplies can make a great gift for someone with chronic pain. Plus, they come at a very wide range of price points, so you can find something perfect without having to overspend. 

I personally have the ai-natebok 36 Colored Fineliner Pens linked below, and I love using them for a wide variety of projects. But there’s also sketch pads, watercolor sets and blank canvas, not to mention color books. 

Find it on Amazon: ai-natebok 36 Colored Fineliner Pens

7. Gift Cards

Of course, when all else fails, sometimes the best gift is a gift card, especially if you’re looking for something last-minute since they can usually be sent via e-mail. 

I especially recommend Amazon gift cards, specifically because they can be used to pay for Amazon Prime Service, which offers both streaming services and fast home delivery – two things that people with chronic pain often love. 

Find it on Amazon: Amazon gift cards

12 Holiday Gifts for People with Chronic Pain and Illness

By Pat Anson

Are doctors and pharmacists helping the DEA spy on pain patients? Does Big Pharma control how healthcare news is reported? Is the Epstein-Barr Virus the hidden cause of your chronic pain? Can kratom be used safely? Are you buzzed that Willie Nelson wrote a cannabis cookbook?

The answers to these and other questions can be found in PNN’s annual holiday gift guide. If you live with chronic pain and illness or have a friend or family member who does, here are 12 books that would make great gifts over the holidays. Or you can always “gift” one to yourself. Click on the book cover or title to see price and ordering information.

The Epstein-Barr Virus: A New Factor in the Care of Chronic Pain

Dr. Forest Tennant examines the Epstein-Barr Virus (EBV) and its hidden role in causing chronic pain. We are all carriers of EBV, which is normally harmless and dormant. But when the virus reactivates, it is carried throughout the body, infecting and damaging body tissues. Dr. Tennant says anyone with chronic pain severe enough to require daily pain medication may have EBV reactivation, and should take steps to diagnose and treat it. 

Policing Patients: Treatment and Surveillance of the Opioid Crisis

Prescription Drug Monitoring Programs (PDMPs) were launched across the country to help prevent drug abuse and save lives. In actuality, author Elizabeth Chiarello says PDMPs are “Trojan horse” surveillance tools used by law enforcement to spy on patients. PDMPs interfere with the practice of medicine by turning doctors and pharmacists into undercover agents — often pitting them against their own patients.

Greed to Do Good: The CDC’s Disastrous War on Opioids

Dr. Charles LeBaron worked for nearly three decades as an epidemiologist for the Centers for Disease Control and Prevention. Although not directly involved in the CDC’s opioid prescribing guideline, LeBaron recognized the disastrous consequences it had on patients. In this book, he gives an insider’s perspective on the CDC’s institutionalized arrogance and how its misguided strategy to reduce overdoses only made the opioid crisis worse.

Follow the Science: How Big Pharma Misleads, Obscures, and Prevails

Journalist Sharyl Attkisson exposes how the pharmaceutical industry infiltrated government and academia, enabling it to put profits over people by controlling how healthcare is covered by the news media. “We exist largely in an artificial reality brought to you by the makers of the latest pill or injection,” Attkisson writes. “Invisible forces work daily to hype fears about certain illnesses, and exaggerate the supposed benefits of treatments and cures.”

Lies I Taught in Medical School

Inspired by his own health problems, Dr. Robert Lufkin wrote this book to expose the “medical lies” that contribute to chronic illness — some of which he taught as a professor at UCLA and USC. Lufkin believes pills and procedures are prescribed too often to mask symptoms, when diet and lifestyle changes can resolve many chronic conditions like diabetes, hypertension, obesity, and cardiovascular disease.

The Big Book of Kratom: The Ultimate Manual to Understanding and Using Kratom

Author Fallon J. Smith takes a deep dive into the pros and cons of kratom, gleaned from many years of using it himself. New kratom users can learn about the various strains and methods of ingesting the herbal supplement to treat everything from chronic pain and anxiety to addiction and depression. Smith also shares important lessons about dosing, side effects, and the potential risks of kratom withdrawal and addiction.

Willie & Annie Nelson’s Cannabis Cookbook

Legendary singer/songwriter Willie Nelson and his wife Annie share their favorite recipes for getting high and full at the same time. Part travelogue and part cannabis cookbook, there’s a colorful story behind every recipe, such as Baked Eggs & Asparagus (with 17mg of THC), Vegan Cannabis Butter, Cannabis Chocolate Cake, and Buttermilk Fried Chicken (no THC).

On Call: A Doctor’s Journey in Public Service

In this memoir, Dr. Anthony Fauci shares some of the highlights — and lowlights — from nearly 40 years working for the National Institutes of Health, including the crucial roles he played in fighting AIDS, the Ebola virus, SARS, anthrax and, of course, Covid-19. Fauci grew up in modest circumstances, living above his father’s Brooklyn pharmacy, to become a health advisor to seven presidents and one of the most famous doctors in world.

Grown Woman Talk: Your Guide to Getting and Staying Healthy

Dr. Sharon Malone is an OB/GYN who wrote this book to help older women deal with the complexities of aging. Often ignored or gaslighted by the healthcare system, older women may have their chronic pain and discomfort dismissed as female hysteria caused by menopause. Dr. Malone has tips to end this “normalized suffering” and empower grown women to live better, age better, and get better medical treatment.

Long Illness: A Practical Guide to Surviving, Healing and Thriving

Drs. Meghan Jobson and Juliet Morgan wrote this book to give patients and providers a better understanding of long-lasting illnesses such as autoimmune disease, chronic fatigue, chronic pain, inflammation and Long Covid. They take a holistic approach to managing symptoms through cognitive behavioral therapy, traditional Eastern medicine, mindfulness and self-care — emphasizing that recovery is a process and not always a destination.

Toxic Stress: How Stress Is Making Us Ill

Dr. Lawson Wulsin is a psychiatrist who has found that toxic stress and childhood trauma often play hidden roles in the development of heart disease, diabetes, depression and chronic illnesses in midlife. In this book, Dr. Wulsin offers practical advice and tools to recognize signs of toxic stress in our lives, and learn how to help your mind and body recover from it.

The Long Covid Reader

Author Mary Ladd shares the stories of 45 people living with Long Covid, who recount in essays and poems how COVID-19 continues to impact their lives long after their initial infections. A long-hauler herself, Ladd spent a year gathering personal stories about Long Covid in an effort to humanize the neglected suffering of millions of people who live with a mysterious chronic illness from the “world's biggest mass-disabling event.”

These and other books about living with chronic pain and illness can be found in PNN’s Suggested Reading page.  PNN receives a small amount of the proceeds -- at no additional cost to you -- for orders placed through Amazon.

Women, Elderly and Rural Americans More Likely to Have Chronic Pain

By Crystal Lindell

American women are more likely than men to experience chronic pain and high-impact pain severe enough to disrupt their lives. Americans of both sexes are also more likely to have pain if they live in rural areas, are over age 65, and of American Indian or Alaska Native descent. 

Those are the findings in a new report from the Centers for Disease Control and Prevention, which found that 24.3% of U.S. adults (60 million people) experienced chronic pain in 2023, while 8.5% (21 million) experienced high-impact pain that limited their daily life and work activities. 

What the report doesn’t tell you is that pain rates have risen dramatically since 2016, the year the CDC introduced its controversial opioid prescribing guideline, which drastically reduced patient access to opioids. Not only has the guideline failed to reduce overdoses, it appears to have worsened pain care for millions of Americans.

In 2016, the National Health Interview Survey estimated that 20.4% (50.0 million) of U.S. adults had chronic pain, while 8% (19.6 million) had high-impact chronic pain. What that essentially means is that 10 million more Americans have chronic pain today than in 2016, and 1.4 million more people have debilitating pain.

The CDC report does not speculate about why pain rates have increased, but a recent study that looked at the same survey data offers some insight, suggesting the increase is due to a number of factors, such as long Covid, more sedentary lifestyles, more anxiety and stress, and reduced access to healthcare.

“The widely-cited 20% prevalence of CP (chronic pain) in the adult US population appears obsolete,” wrote co-authors Anna Zajacova, PhD, and Hanna Grol-Prokopczyk, PhD, in medRxiv. “Our findings indicated that chronic pain, already a widespread issue, has reached new heights in the post-pandemic era, necessitating urgent attention and intervention strategies to address and alleviate this growing health crisis.”

While the CDC report neglects to cover the causes of pain, it does provide a detailed look at chronic pain rates by sex, race, age, and location.  For example, researchers found that people aged 65 and older are three times more likely to have chronic pain than young adults, while Whites are more likely to have pain than Blacks, Hispanics and Asians.

Chronic and High-Impact Pain by Sex:

• Women: 25.4% and 9.6%

• Men: 23.2% and 7.3%

Chronic and High-Impact Pain by Age:

• Ages 18–29: 12.3% and 3.0%

• Ages 30–44: 18.3% and 4.9%

• Ages 45–64: 28.7% and 11.3%

• Ages 65 and older: 36% and 13.5%

Chronic and High-Impact Pain by Race: 

• American Indian and Alaska Native: 30.7% and 12.7%

• White: 28% and 9.5%

• Black: 21.7% and 8.7%

• Hispanic: 17.1% and 6.5%

• Asian: 11.8% and 2.6%

Whether you live in a city, suburb or rural area also affects pain rates, with rural Americans significantly more likely to have chronic pain than those who live in cities. In the CDC study, large metropolitan areas of one million or more people are categorized as “central” or “fringe” counties. Medium and small metropolitan areas are counties with 250,000–999,999 people or less than 250,000 people, respectively. Non-metropolitan areas are rural counties with significantly fewer people.

Chronic Pain by Urban Area:

• Large central metropolitan area: 20.5% 

• Large fringe metropolitan area: 22.5%

• Medium and small metropolitan area: 26.4% 

• Non-metropolitan area: 31.4%

The CDC does not address the impact of chronic pain in its bare-bones report. But independent researchers Anna Zajacova and Hanna Grol-Prokopczyk do in their analysis, pointing out that pain “profoundly impacts” physical, mental and cognitive health, as well as employment, relationships, sexual function and sleep. It all adds up to an economic impact of $560-$635 billion annually — more than any other health condition.

“The findings are a call to action for public health professionals, policymakers, and researchers to further investigate the root causes of this increase. Addressing the rise in chronic pain is critical, as pain serves as a sensitive barometer of population health and has profound economic, social, and health consequences,” they wrote.

More Americans Have Chronic Pain Than Ever Before

By Pat Anson

Rates of chronic pain and high-impact pain have risen sharply in the United States since the start of the COVID-19 pandemic, which is likely due to an increase in sedentary lifestyles, anxiety and reduced access to healthcare.

In a study preprinted in medRxiv, researchers estimate that 60 million Americans in 2023 had chronic pain, up from 50 million in 2019. The study is based on results from 2019, 2021 and 2023 National Health Interview Surveys (NHIS) of a nationally representative sample of about 88,500 U.S. adults.

Caution is warranted when research is preprinted before undergoing peer-review, but the findings here are startling. Rates of chronic pain (CP) rose from 20.6% in 2019 (before the pandemic), to 20.9% in 2021, and surged to 24.3% in 2023.

High impact chronic pain (HICP), which is pain strong enough to limit daily life and work activity, rose from 7.5% of adults in 2019 to 8.5% in 2023. That translates to 21 million Americans living with debilitating pain.

“Chronic pain and high-impact chronic pain surged dramatically after the COVID pandemic. The widely-cited 20% prevalence of CP in the adult US population appears obsolete,” wrote co-authors Anna Zajacova, PhD, at Western University in Ontario and Hanna Grol-Prokopczyk, PhD, at the University of Buffalo.

“Our findings indicated that chronic pain, already a widespread issue, has reached new heights in the post-pandemic era, necessitating urgent attention and intervention strategies to address and alleviate this growing health crisis.”

The increases in pain occurred in almost all body areas, such as the head, abdomen, back, arms, hands, hips, knees and feet, except for jaw and dental pain. All age groups and both sexes were affected.  

SOURCE: medRxiv

Researchers say being infected with COVID or having long COVID played a significant role in the increases, but social and economic causes may have also been at work. Pain could have worsened due to anxiety, depression, loneliness, physical inactivity and reduced access to health care, as well as inflation and economic hardships caused by the pandemic.

“The 2023 surge is not restricted to specific demographics or body sites — it is widespread across the population subgroups and affects all examined pain sites except jaw/dental pain. Further, the increase persisted even after accounting for potential drivers such as COVID-19 infections, socioeconomic factors, and other potentially important covariates such as mental health or health behaviors. This suggests that a broader, more complex set of factors may be at play,” researchers reported.

“Thus, while the viral infections certainly had an impact, other societal and lifestyle changes that occurred during and after the pandemic may have contributed to the increase in pain. The role of increased social isolation and loneliness, disrupted health care access, and heightened levels of stress and anxiety, all of which were exacerbated by the pandemic, should be explored in future research.”

Although chronic pain rates have surged over the last few years, there has been little response from healthcare providers and regulators. In fact, the just opposite happening. The Food and Drug Administration predicted a 7.9% decline in medical need for opioid pain medication in 2024, and anticipates a 6.6% decrease in demand next year.

The Drug Enforcement Administration uses those FDA estimates when setting its annual production quotas for opioids, which have fallen for eight straight years. Since 2015, the supply of oxycodone has been reduced by over 68% and hydrocodone by nearly 73%.

Many pain patients feel like they’ve been abandoned by the healthcare system, according to a 2023 PNN survey of nearly 3,000 patients or caregivers. About one in five patients have been unable to find a doctor to treat their pain, and 12% say they were abandoned or discharged by a doctor. Many are now hoarding opioid medication or turning to other substances for relief.

Those findings from our survey are now being reflected in the study on rising pain rates.

“The findings are a call to action for public health professionals, policymakers, and researchers to further investigate the root causes of this increase. Addressing the rise in chronic pain is critical, as pain serves as a sensitive barometer of population health and has profound economic, social, and health consequences,” said Zajacova and Hanna Grol-Prokopczyk.

Five Strategies to Support Chronic Pain Caregivers

By Mara Baer

As someone who has lived with chronic pain for ten years, I worry about my health and future. I also worry about my ability to be fully present for my kids and spouse, and the load that he carries in our family life.

When my pain first became chronic, my husband’s expanded role became critical. He did more driving, more cooking, and more laundry. There was always more for him to do. When my pain became so persistent that it impacted my mental health, his responsibilities grew even more.

Fifty million people in America live with chronic pain. We are five times more likely to experience depression and anxiety, and our risk of suicide is twice as high as people without pain. Isolation, elevated stress, and loneliness are also common. Because the healthcare system does not typically address the biopsychosocial nature of pain – the biological, psychological and social factors behind it -- these problems persist and have deep impacts on our relationships and caregivers.

When I was at my darkest times with chronic pain, I felt helpless. Feeling helpless lead to acting helpless, which added to the caregiving burdens of my spouse. Many days I could not get myself out of bed, as the pain and my sadness about it were too great. I avoided family and social activities, and doing chores around the house.

I thought I was allowing my body the rest it needed, but I’ve since learned that avoiding movement and isolating oneself can exacerbate pain, and deepen depression and anxiety. This created a vicious cycle, where lack of activity leads to more pain and worsens mental health.  

My husband watched as I declined and kept picking up the pieces. We spent years like this, but we didn't have to. I now have five key strategies that can help caregivers and their loved ones:

1. Learn about the biopsychosocial nature of pain: The complex nature of pain involves many factors, including the brain’s capacity to become hardwired to pain, as well as social and emotional issues. "The Pain Management Workbook" by Rachel Zoffness provides an excellent tutorial on the biopsychosocial aspects of pain and is a useful tool for caregivers and those living with pain. As caregivers learn more about the multi-faceted nature of pain, it becomes easier find ways to improve pain care.

2. Explore pain reprocessing and other therapies: In "The Way Out" by Alan Gordon, readers can learn about the neuroscience of chronic pain and how Pain Reprocessing Therapy (PRT) can teach the brain to “unlearn” chronic pain. Several pain therapy programs are grounded in this model, which has been found to provide significant pain relief. Caregivers should also evaluate other therapies that can help manage pain, including Cognitive Behavioral Therapy and Acceptance Commitment Therapy.

3. Evaluate healthcare stigma: People living with chronic pain often face stigma in the healthcare system. This impacts their access to care and mental health. Caregivers should evaluate whether stigma is occurring, which may result in the undertreatment of pain by providers and skepticism about patient suffering.

4. Assess your own pain and mental health: Like other caregivers, chronic pain caregivers can experience stress, isolation and burnout. That burden is often correlated with a patient’s pain, anxiety, depression, and lower self-efficacy. Over half of caregivers’ struggle with their own pain, which impacts their mental health and ability to serve in the caregiving role. Self-evaluation is important for caregivers to assess their own medical and mental health, and to seek support when needed.

5. Join a support group: Chronic pain is isolating, not only for people living with pain but also their caregivers. Connecting with others who understand these challenges can be incredibly healing and supportive. There are many support groups online. The U.S. Pain Foundation hosts a regular free support group for caregivers, providing opportunities to share challenges and coping strategies.

When I finally became aware of the evidence around the biopsychosocial nature of pain, it was a turning point for me and my spouse. After learning that nearly all chronic pain conditions have a psychological component, I sought mental health support, coaching and counseling. This helped me see that the way I coped with pain would never work, and that moving my body, avoiding isolation and acknowledging my emotions would help me feel better and engage more fully in family life.

There are times my husband may still carry a heavier load, especially when I am having a pain flare, but his caregiving responsibilities are more manageable now. And I am certainly more present in our family and relationship.

Mara Baer has lived with Neurogenic Thoracic Outlet Syndrome for over 10 years. She is a writer, speaker, and health policy consultant offering services through her women-owned small business, AgoHealth. Mara is a member of the National Pain Advocacy Center’s Science and Policy Council and recently launched a newsletter called Chronic Pain Chats.

Pain Patients More Likely Than Doctors to Favor Greater Access to Cannabis

By Pat Anson

Americans living with chronic pain are significantly more likely to support greater access to cannabis than the physicians who treat them, according to a new survey that found broad support for cannabis education in medical schools.

Rutgers Health surveyed over 1,600 adults with chronic pain and 1,000 physicians in states with medical cannabis programs. The survey results, recently published in JAMA Network Open, show that 71% of  pain patients support federal legalization of medical cannabis, compared to 59% of physicians.

Patients are also more likely to support nationwide legalization of recreational cannabis (55%), compared to about a third of physicians (38%).

"Cannabis is unique in terms of the complicated policy landscape," said lead author Elizabeth Stone, PhD, an Instructor at Rutgers Robert Wood Johnson Medical School. "Depending on what state you're in, it could be that medical cannabis is legal, it could be that medical and recreational use are legal, it could be that neither is legal, but some things are decriminalized.”

Currently, 38 states and Washington, DC have legalized medical cannabis and 23 of those states (plus DC) have legalized its recreational use. Cannabis remains illegal under federal law as a Schedule I controlled substance, but the DEA is considering a proposal from the Biden Administration to reclassify cannabis as Schedule III substance, which would allow for limited use of cannabis-based medication.

Personal experience plays a significant role in shaping attitudes about cannabis. The Rutgers survey found that people who used cannabis for chronic pain had the highest levels of support for expanding access, while physicians who don’t recommended cannabis for pain management had the lowest levels of support.

Although they have different attitudes about legalization, about 70% of patients and physicians favor requiring medical schools to train future doctors on cannabis treatment of chronic pain. There is also broad support for training that would allow physicians and nurse practitioners to recommend cannabis to their patients.  

"I think it points to the need for future guidance around cannabis use and efficacy," Stone said. "Is it something they should be recommending? If so, are there different considerations for types of products or modes of use or concentration?"

Nearly two thirds of patients (64%) and about half of physicians (51%), favor requiring insurance companies to cover cannabis treatment of chronic pain.

Support for Cannabis Policies

JAMA NETWORK OPEN

Previous surveys have also found distinct differences in patient and physician attitudes about cannabis. A recent survey of primary care doctors found that nearly one in five (18%) would not accept a new patient using medical cannabis. And 40% said they would not accept a patient using non-medical or recreational cannabis.

Many doctors are worried what their colleagues will think or what law enforcement will do if they prescribed or recommended cannabis. A 2019 survey of oncologists and pain management specialists found that nearly two-thirds (65%) were concerned about the legal repercussions of recommending medical cannabis to their patients. And 60% were worried about professional stigma.

Many patients who live with chronic pain are turning to cannabis as an alternative to opioids. A recent PNN survey found that over 30% of pain patients said they had used cannabis for pain relief. Many did so because they couldn’t get an opioid prescription or had problems getting one filled.

Teen in Chronic Pain Had Surgery, but Insurer Won’t Cover It

By Lauren Sausser, KFF Health News

When Preston Nafz was 12, he asked his dad for permission to play lacrosse.

“First practice, he came back, he said, ‘Dad, I love it,’” recalled his father, Lothar Nafz, of Hoover, Alabama. “He lives for lacrosse.”

But years of youth sports took a toll on Preston’s body. By the time the teenager limped off the field during a lacrosse tournament last year, the pain in his left hip had become so intense that he had trouble with simple activities, such as getting out of a car or turning over in bed.

Months of physical therapy and anti-inflammatory drugs didn’t help. Not only did he have to give up sports, but “I could barely do anything,” said Preston, now 17.

No Medical Billing Code

A doctor recommended Preston undergo a procedure called a sports hernia repair to mend damaged tissue in his pelvis, believed to be causing his pain.

PRESTON NAFZ

The sports medicine clinic treating Preston told Lothar that the procedure had no medical billing code — an identifier that providers use to charge insurers and other payers. It likely would be a struggle to persuade their insurer to cover it, Lothar was told, which is why he needed to pay upfront.

With his son suffering, Lothar said, the surgery “needed to be done.” He paid more than $7,000 to the clinic and the surgery center with a personal credit card and a medical credit card with a zero-interest rate.

Preston underwent surgery in November, and his father filed a claim with their insurer, hoping for a full reimbursement. It didn’t come.

But the final bill did: $7,105, which broke down to $480 for anesthesia, a $625 facility fee, and $6,000 for the surgery.

‘Trying to Wiggle Out’

Before the surgery, Lothar said, he called Blue Cross and Blue Shield of Alabama and was encouraged to learn that his policy typically covers most medical, non-cosmetic procedures.

But during follow-up phone calls, he said, insurance representatives were “deflecting, trying to wiggle out.” He said he called several times, getting a denial just before the surgery.

Lothar said he trusted his son’s doctor, who showed him research indicating the surgery works. The clinic, Andrews Sports Medicine and Orthopaedic Center, has a good reputation in Alabama, he said.

Other medical providers not involved in the case called the surgery a legitimate treatment.

A sports hernia — also known as an “athletic pubalgia” — is a catchall phrase to describe pain that athletes may experience in the lower groin or upper thigh area, said David Geier, an orthopedic surgeon and sports medicine specialist in Mount Pleasant, South Carolina.

“There’s a number of underlying things that can cause it,” Geier said. Because of that, there isn’t “one accepted surgery for that problem. That’s why I suspect there’s not a uniform CPT.”

CPT stands for “Current Procedural Terminology” and refers to the numerical or alphanumeric codes for procedures and services performed in a clinical or outpatient setting. There’s a CPT code for a rapid strep test, for example, and different codes for various X-rays.

The lack of a CPT code can cause reimbursement headaches, since insurers determine how much to pay based on the CPT codes providers use on claims forms.

More than 10,000 CPT codes exist. Several hundred are added each year by a special committee of the American Medical Association, explained Leonta Williams, director of education at AAPC, previously known as the American Academy of Professional Coders.

Codes are more likely to be proposed if the procedure in question is highly utilized, she said.

Not many orthopedic surgeons in the U.S. perform sports hernia repairs, Geier said. He said some insurers consider the surgery experimental.

Preston said his pain improved since his surgery, though recovery was much longer and more painful than he expected.

By the end of April, Lothar said, he’d finished paying off the surgery.

Partial Payment

A billing statement from the surgery center shows that the CPT code assigned to Preston’s sports hernia repair was “27299,” which stands for “a pelvis or hip joint procedure that does not have a specific code.”

After submitting more documentation to appeal the insurance denial, Lothar received a check from the insurer for $620.26. Blue Cross and Blue Shield didn’t say how it came up with that number or which costs it was reimbursing.

Lothar said he has continued to receive confusing messages from the insurer about his claim.

Both the insurer and the sports medicine clinic declined to comment.

The Takeaway

Before you undergo a medical procedure, try to check whether your insurer will cover the cost and confirm it has a billing code.

Williams of the AAPC suggests asking your insurer: “Do you reimburse this code? What types of services fall under this code? What is the likelihood of this being reimbursed?”

Persuading an insurer to pay for care that doesn’t have its own billing code is difficult but not impossible, Williams said. Your doctor can bill insurance using an “unlisted code” along with documentation explaining what procedure was performed.

“Anytime you’re dealing with an unlisted code, there’s additional work needed to explain what service was rendered and why it was needed,” she said.

Some patients undergoing procedures without CPT codes may be asked to pay upfront. You can also offer a partial upfront payment, which may motivate your provider to team up to get insurance to pay.

KFF Health News is a national newsroom that produces in-depth journalism about health issues.