The Strange Denial of Complications Caused by Poorly Treated Pain

By Drs. Forest Tennant and Scott Guess

There has been no shortage of controversy, scandal and fraud regarding the opioid and pain crises of the past decade. One standout in the debate over opioids and pain treatment has been a lack of an honest, objective discussion of the benefits of pain care.

A basic tenet in medical practice and therapeutics is what is called the “risk-benefit” ratio. This is a simple analysis of whether a specific drug or therapeutic measure has more benefit than risk.

For example, the risk-benefit of drugs taken during pregnancy is well-known and established. But strangely, the debate over whether opioids have more benefit than risk in the treatment of pain has never been broached.

None of the parties involved, especially the anti-opioid zealots, will discuss any benefit that opioids may bring. In fact, essentially their only discussion is that opioids are a risk for overdose and addiction, so they have no benefit and shouldn’t be used.  

This risk is overrated and overstated in relation to opioids prescribed and monitored by a physician. According to the CDC, total opioid overdose deaths in the US (including deaths from illicit opioids) were 24 deaths per 100,000 population in 2023.

That compares to the overdose death rate for prescribed opioids, which was 4 per 100,000 population. That is a raw number for prescribed opioids.  Some data reports opioid deaths among physician monitored chronic pain patients to be as low at 0.1 per 100,000 population. 

In other words, the overdose risk of evidence with prescription opioid is minuscule.

Pain has a number of pathological complications that benefit from opioid therapy. In addition to physical relief, there are humanitarian benefits, such as a reduction in suffering, and the ability to mentally and physically function as a productive person.

When poorly treated or left untreated, chronic pain has profound negative and deleterious effects on the cardiovascular and endocrine (hormonal) systems. Pain puts the cardiovascular system into overdrive, which raises blood pressure and pulse rates. Coronary artery spasm may also result from severe chronic pain.

We can personally attest to prescribing blood pressure medication and nitroglycerin to many pain patients at risk of cardiac arrest or heart failure.

Hormonal suppression and deficiency of cortisol, testosterone, estradiol and other hormones are also common in undertreated chronic pain patients. Cortisol levels can drop below levels that sustain life. We have administered emergency cortisone to pain patients who were severely ill, debilitated, and near collapse because they had inadequate cortisol levels.

Among Dr. Thomas Addison’s eleven reported original cases of Addison’s Disease in 1855, about half had serious intractable pain conditions such as adhesive arachnoiditis.

Chronic pain has also been found to alter blood glucose and lipids (cholesterol). Sleep deprivation is another major problem in pain patients.  And anorexia with malnutrition is common.

Given the medical complications induced by pain, one would logically think that there would always be a discussion of risk-benefit when discussing opioid therapy. But we’ve never heard or seen such a discussion in medical literature or in political circles.

As if denial of benefits over risks weren’t bad enough, an even stranger denial has occurred. We have searched the major medical textbooks used in medical schools today, and couldn’t find a single word that chronic pain is a risk for hypertension and cardiac disease, much less hormonal deficiencies.

Isn’t it time we quit denying that chronic pain has medical complications that can be easily treated with opioids and other medicinals? The risks of opioid therapy simply don’t outweigh the benefits. 

Forest Tennant, MD, DrPH, is retired from clinical practice but continues his research on the treatment of intractable pain and arachnoiditis. Readers interested in learning more about his research should visit the Tennant Foundation’s website, Arachnoiditis Hope. You can subscribe to its research bulletins here.   

Scott Guess, PharmD, operates an independent pharmacy and clinic in Atascadero, CA that specializes in pain management and arachnoiditis.

The Tennant Foundation gives financial support to Pain News Network and sponsors PNN’s Patient Resources section.  

When Headlines Lie: Misleading News About Opioids and Chronic Pain

By Neen Monty

The headline in Physician’s Weekly screams alarm:

“Rising Use of Potent Opioids in Chronic Pain Management”

And then the sub heading:

“Long-term opioid use for chronic pain doubled, with potent opioids rising, underscoring the need for stronger guideline adoption”

Terrifying, right? We must do something!

But now, read the article. It’s based on a study recently published in the European Journal of Pain on the prevalence of long-term opioid therapy (LTOT) when treating patients with chronic non-cancer pain.

The Dutch study looked at opioid use over a ten-year period, from 2013 to 2022, using a large dataset drawn from primary care records in the Rotterdam region. This database covered more than half a million patients and included data from over 240 general practitioners.

The researchers focused on adults aged 18 and over who had been prescribed opioids continuously for at least three months. They tracked how common LTOT was over time, and also explored which diagnoses, co-existing conditions, and other medications were associated with it. They reported their findings using basic descriptive stats and calculated LTOT prevalence per 100 patient-years to show trends over the decade.

And what did they find?

“The prevalence of LTOT increased twofold from 0.54% (95% CI: 0.51–0.58) per 100 patient years in 2013 to 1.04% (95% CI: 1.00–1.07) in 2022. The proportion of LTOT episodes solely involving potent opioids slightly increased between 2013 and 2022”

In plain English, the prevalence of long-term opioid use by patients at the end of the study was just over 1%.

Yes, that’s right: 1%.

And the prevalence increased by just half a percentage point over a decade.

Hardly a crisis. Hardly anything to scream about.

But we can’t have that! We need a clickbait headline to demonize opioids and stop their prescribing! So, instead of reporting accurately on the very small increase in opioid prescribing, they focus on the “twofold” increase. Trying to manufacture a crisis where there is none.

It’s true, the prevalence of LTOT did double, from half a percent to one percent. And that’s what the headline highlighted, to try and make it sound like there is an opioid crisis in Europe. There is not.

This tactic is often used in presenting medical research – using relative percentages rather than the actual numbers. That is because relative percentages -- “Opioid Use Doubled!” -- sounds worse than “Opioid Use Increased by Half a Percent.”

It’s a trick that researchers and the media use all the time.

Why do this? It’s dishonest. It’s deceptive. And it destroys our trust in science. They are trying to manufacture a crisis when there is none.

Why not research and report an actual crisis? Instead of making one up?

The Physician’s Weekly headline exemplifies the worst of scientific spin: inflating tiny fractional changes and omitting context. It potentially harms patients by reinforcing the myth that opioids don’t work long term and should be withheld. That myth persists because of misleading reporting like this.

Finally! An Honest Headline

It was nice to see some accurate reporting in Scimex, an Australian online news portal that tries to help journalists cover science. Instead of the usual deceptive, sensationalist headlines, this one tells the truth:

“Pain Reprocessing Therapy (PRT) could help those with mild chronic back pain”

This was so refreshing to see! Because it’s so very, very rare.

Most reporting on PRT glosses over a critical point: It has only been studied in people with mild, non-specific back pain. An average of 4 on the zero-to-10 pain scale.

That nuance is often lost in the hype about alternative treatments like PRT, cognitive behavioral therapy, mindfulness and TENS.

You do not treat 8/10 back pain the same way you treat 4/10 back pain.

What happens when people are misled about PRT? It gets recommended to people with severe, pathological pain — often with clearly identifiable causes — and everyone acts surprised when it doesn’t work.

Let’s be clear:

• PRT is not for severe back pain

• PRT is not for pain caused by pathology

• PRT is not a cure-all

But you wouldn’t know that from most headlines about PRT, such as “New therapy aims to cure back pain without drugs, surgery” and “A New Way to Treat Back Pain.”

Then you read the small print: All the participants in PRT studies had non-specific back pain from an unknown cause. And they had mild pain.

The researchers are often complicit, cherry-picking and hyping their own data. Why? Because they need funding. Because they’re writing a book. Because professors have to "publish or perish" to keep their jobs. Because it’s easier to mislead the public than to admit a therapy has limits. And you don’t get to be a guru if your therapy only works for a minority of patients with mild pain.

This kind of spin harms people with severe chronic secondary pain. It feeds the narrative that if you're still in pain, then it’s your fault. You didn’t try hard enough. You’re catastrophizing. You need to retrain your brain.

It feeds the stigma that all chronic pain is mild and easily curable. And that anyone who says their pain is severe has psychological problems.

No. Maybe their pain is caused by pathology, like tissue damage or herniated discs. Maybe their pain is nociceptive or neuropathic.

This is why chronic pain patients must be included on every research team. Someone with real-world, high-impact chronic pain would never let this kind of misrepresentation slide. And the rest of the team wouldn’t be able to claim ignorance.

We need more honesty and integrity in research and the media. We need headlines that reflect the actual findings. We need conclusions that match the data, not some predetermined narrative. Right now, most media coverage doesn’t even try.

Read the study, then read the headline. They rarely match. That’s how we ended up with a generation of healthcare providers who think opioids are bad, all chronic pain is primary pain, and that PRT is some miracle therapy.

It’s not. PRT may be helpful to people who are depressed or have anxiety, but should not be a first-line treatment for everyone. It’s only been tested in people with mild back pain for which there is no known physical cause. It has not been shown to work for people with severe pain or structural pathology.

But the researchers usually gloss over that. And the headlines and conclusions rarely reflect those facts or spell out who PRT is for and who it is not for.

Because here’s the truth: Pain Reprocessing Therapy is not a treatment for chronic pain. It’s a treatment for anxiety and depression.

That’s the real headline.

Neen Monty is a patient advocate in Australia who lives with rheumatoid arthritis and Chronic Inflammatory Demyelinating Polyneuropathy (CIDP), a progressive neurological disease that attacks the nerves.

Neen is dedicated to challenging misinformation and promoting access to safe, effective pain relief. She has created a website for Pain Patient Advocacy Australia to show that prescription opioids can be safe and effective, even when taken long term. You can subscribe to Neen’s free newsletter on Substack, “Arthritic Chick on Chronic Pain.”

Does Having a Diagnosis Change How You Are Treated?

By Crystal Lindell

A few months after I got my first official diagnosis of Ehlers-Danlos syndrome in 2018, I had an appointment with a new orthopedic doctor. 

I was having really bad pain in my left shoulder that I injured while on crutches, which I was using as a result of a foot injury. It felt like I couldn’t catch a break. 

There was a new EDS diagnosis on my patient intake form, which I assumed would be relevant in one way or another. I turned in the form and was led back to a patient room to go over all my symptoms with the nurse, before being left to anxiously wait in an overly air conditioned exam room to meet the doctor. 

When he finally walked in, he didn’t bother to say hello. In fact, before he even introduced himself, he looked up from my patient intake form, scanned me up and down, and said in an accusatory tone, “So. What makes you think you have Ehlers-Danlos syndrome?”

The question caught me off guard. I didn’t “think” I had EDS. I had literally been diagnosed by another doctor in the same hospital system a few months prior.

“Um, well, I was diagnosed by a doctor who works here, and my mom has it, my brother has it, my uncle has it, and my cousin has it.”

“Oh,” he replied, before hastily trying to move on. But the tone had already been set. Instead of it being a meeting between patient and caregiver, it had shifted to a meeting between patient and accuser.

For many years, I had assumed that having an official medical diagnosis would change how doctors treated me. I spent five years blindly struggling with a chronic pain that had no name, desperately searching for a diagnosis or cause. 

If only I had the validation of some sort of official medical diagnosis, then finally they would have to take me seriously. Or so I thought. 

But here I was, getting a crash course in why that wasn’t going to be the case. 

It turns out that doctors who try to dismiss you pre-diagnosis will also try to dismiss you post-diagnosis. 

I also assumed that if I had a “real” diagnosis, my family, friends and professional contacts would be more willing to accept the pain that had been plaguing me for years. 

But alas, that was not the case either. Explaining to them that I had Ehlers-Danlos syndrome resulted in zero changes in their behavior either. 

What I did find is that people who empathized with my chronic pain pre-diagnosis also empathized with my pain post-diagnosis. 

It turns out, it was never about the diagnosis.The people who sneered, judged and dismissed me before I knew I had EDS, continued to sneer, judge and dismiss me after I knew I had EDS too. 

Where before they would try to blame their behavior on my lack of a diagnosis, they just found new reasons after I did have one. Their justifications turned to things like blaming my weight, calling me lazy, and lamenting that if I really wanted to get better, I would try more treatments and take fewer opioids. 

I understand the personal toll it can take to deal with health issues without a diagnosis. And knowing that I have EDS helped me find online support groups and helped me better navigate my medical care. So I do fully support continuing the search for answers if you’re undiagnosed. 

But as a patient who spent years in pain, both with and without a diagnosis, I’m unfortunately here to report that finally getting one probably won’t change how most doctors and loved ones treat you. 

Because how they treat you has never been based on you – it was always just a reflection of themselves.

What Is Legitimate Pain?

By Dr. Forest Tennant

The question posed by the headline of this article may at first seem ridiculous or unneeded. But a definition of “legitimate pain” is really needed.

Federal government regulations require physicians to get a DEA license to prescribe opioids and other controlled substances. The prescribing must be for a “legitimate medical purpose” -- which is obviously intended to mean legitimate pain. 

It may be surprising, but the federal government doesn’t have a definition for legitimate pain.  State medical boards throughout the United States also do not define legitimate pain, although they monitor physicians for the “legitimacy” of their treatments. 

Recent history has shown that many physicians have been investigated and prosecuted for prescribing opioids without a “legitimate medical purpose,” despite the fact that there is no written definition of legitimate pain to be found in medical regulations and guidelines.

The lack of a written definition of legitimate pain has allowed wide discretion and abuse by prosecutors and their hired medical consultants, making it difficult for doctors to defend themselves against a system that is seemingly rigged against them.

Government agencies, medical boards, professional groups, and insurance plans also call pain “illegitimate” if they don’t like the treatment, dosage, brand, doctor, or cost. 

As unbelievable as it may sound, I’ve read and heard some terribly biased and ignorant definitions of what is and isn’t legitimate pain. 

For example, I’ve heard that a simple need for opioids makes pain illegitimate. The new definition of pain, according to some physicians, is really “opioid use disorder,” which requires treatment for addiction. I’ve also read that pain is a character deficiency and a natural part of life that needs no treatment.

There are some well-meaning persons who claim that pain is whatever the patient says it is. Sorry patients, there are simply too many addicts prowling doctor’s offices with detailed, fraudulent claims of pain fabricated to obtain opioids. Common sense and science tell us to “find the cause of pain before you prescribe.”   

It’s hard to believe, but the International Association for the Study of Pain defines pain as “an unpleasant sensory and emotional experience.”  I can’t wait to ask United Healthcare and Medicare to pay for an expensive drug with this definition.

It is important to point out that the term “legitimate pain” is not only lacking in regulatory guidelines, but it is also not found in medical dictionaries.  Pain may be an experience, emotion or sensation, but it has historically been regarded as a symptom of an underlying disease or injury. 

For example, the Dunglison’s Medical Dictionary of 1874 says “pain is generally symptomatic.”  Medical practitioners today, however, need a new definition of pain because the term “legitimate” is now used to justify treatment with opioids and other controlled drugs. 

Here is my definition of pain, which I believe will generally satisfy all parties, including patients, practitioners, governmental bodies, insurance companies, and the media:

“A stressful symptom caused by a disease or injury that can be objectively identified by diagnostic tests or physical examination.”  

In the past, an argument was made that some causes of pain, such as fibromyalgia and headaches, can’t be objectively verified.  This may have been true in the past, but today’s technological advances in medical imaging and laboratory tests, along with a detailed physical examination, can objectively determine the cause of nearly every source of pain. 

An examination of my submitted definition not only implies that a medical practitioner has the right to treat the patient, it also implies that the practitioner has an obligation to treat both the pain and the cause. 

Forest Tennant, MD, DrPH, is retired from clinical practice but continues his research on the treatment of intractable pain and arachnoiditis. Readers interested in learning more about his research should visit the Tennant Foundation’s website, Arachnoiditis Hope. You can subscribe to its research bulletins here.   

The Tennant Foundation gives financial support to Pain News Network and sponsors PNN’s Patient Resources section.

Living With Chronic Pain Teaches You to Ignore the Haters

By Crystal Lindell

When I first started having chronic pain in 2013, one of the major hurdles I faced was that I suddenly had a lot of trouble handling my full-time job. Doing a 90 minute commute each way, managing stress, traveling for conferences – all of it became infinitely more difficult. 

A lot of bosses probably would have immediately started to look for ways to let me go at that point, but I was lucky enough to have one who didn’t. He was an incredible mentor, friend and advocate for me – both within the company and with third parties. 

In fact, I would often rave about him to others, bragging about how empathetic and compassionate he was about the whole situation. 

A few years later, my boss started to have really bad knee pain, to the point that he eventually needed a knee replacement. 

Before he could have the surgery though, we had to cover a week-long industry conference at an exhibition hall together, and the whole experience left him very drained. He was suddenly experiencing chronic pain. 

Near the end of the week our team was having dinner, and he leaned over to tell me something. 

“I’m sorry I was not more compassionate to you about your health problems. It’s so awful. I go to bed tired, I wake up tired. The pain is always there. It’s horrible. I should have been nicer,” he told me.

I was stunned. 

This was someone who I had always categorized as being among the most compassionate about my chronic pain. And here he was – now faced with it himself – feeling as though he should have been even nicer. 

I always point to that story when I talk about why I don’t take it personally when others judge how I manage my life with chronic pain. Until you’ve been through it, it’s really hard to truly understand what it’s like to live with it – and what you’d do to make it stop. 

Even the most compassionate people often find that they were not compassionate enough. That it’s worse than they previously understood. 

And most people are not compassionate. On the contrary,  over the years a lot of people have been really judgemental about my health choices. People love to offer unsolicited advice, talk behind my back, and make rude comments like these: 

“She just wants to get high all day.”

“If you really wanted to get better you’d take up running/yoga/pilates and lose weight.”

“How bad could it be? She’s just lazy.”

But one thing I’ve noticed repeatedly is that when life hands them a health problem of their own, they are quickly humbled. 

People who thought I wasn’t doing enough to get better suddenly feel overwhelmed by something as routine as an MRI.

People who thought I took too many pain pills suddenly ask me for tips on how to get their doctor to prescribe pain medication. 

People who sneered at my kratom use suddenly want a tutorial on how to use it. 

People who called me childish for advocating for universal health care suddenly realize that the health insurance industry doesn’t care if they live or die. 

And people who thought I wasn’t doing enough to further my career quit their jobs and stopped working altogether. 

To be honest, I get it. It’s really hard to conceptualize a life with chronic pain or any chronic health issue until it happens to you. And it’s easy to judge how someone else is handling it. 

So when they are humbled, I never say “I told you so.” Instead, I offer sympathy, and whatever advice they ask for. 

And I tell them the most important thing you can tell someone with chronic pain: You are not crazy, you are not alone, and you can still live a very fulfilling life regardless of your health issues. 

Before that happens though, before they are humbled, when they are still healthy and offering judgements, I do something else – I ignore them. Because I know that no matter what they say, they wouldn’t handle my chronic pain any better than I do. 

To quote one of the most famous song writers of our generation: 

“Haters gonna hate, hate, hate, hate, hate. Baby, I'm just gonna shake, shake, shake, shake, shake. I shake it off, I shake it off.”

A Pained Life: When Disaster Strikes

By Carol Levy

I am watching a TV show. A tornado hits the main character's house. Suddenly, her house and all her possessions are scattered everywhere, broken and crushed, her house virtually demolished.

I watch as she looks through the detritus, more and more frantic in an effort to find something – anything -- that wasn't broken or totally destroyed.

“How can you recover from something like that? She lost everything,” I thought to myself.

My eyes start to tear up, my stomach clutches. This feels familiar.

Then it hits me. Trigeminal neuralgia did the same thing to me.

People often try to comfort disaster victims with heartfelt, but meaningless cliches: "You have your health" or "At least you're safe.”

The same words were said to me about my pain, even the line about still having my health. Well, yes, trigeminal neuralgia only caused severe pain to my face. The rest of me was physically whole. But was I healthy? No.

“There's always a chance they'll find something to help you,” was something else I heard -- even after 14 brain surgeries, including one that was 100% experimental. I have tried all there is to try. My neurosurgeon made that very clear to me.

This all started when I was 26, just beginning life. 

I wanted to be a singer.  The year before the pain began, I was in two musicals. It was in the lowest rung of professional theater, but it was what I wanted to do. The pay was less than what it cost me for the gas I used to get to the theater, but a paycheck is a paycheck.

With all my hopes and dreams of becoming a professional singer, and two whole shows on my resume, I packed my bags and moved to New York City, like so many other young people with the same dream.

For most of the first 6 months, I had a job as a receptionist. My boss promised me time off for auditions and classes. I was living my dream, holding the hope and fantasy of success in my hand.

Then, out of the blue, the pain started. Constant, spontaneous and triggered. Just a light touch from a wisp of hair could set it off. I didn’t know when the spontaneous pain would come, and had no control over the constant pain.

Soon, it affected my left eye. Any bright light or use of my eye caused breathtaking pain. The rest of me was fine, but I was now 100% disabled by pain.

It kept me virtually housebound, going out only for groceries, doctor's appointments, and the pharmacy. I stayed in as much as I could. Either the pain was so great I couldn't go out, or the fear of it being triggered kept me its prisoner.

Most of us are fine one minute, then wham, the pain strikes.

Our pain is like a tornado. For some, it comes on suddenly like a whirling dervish. For others, like the buildup to a tornado, it slowly gathers strength before demolishing who we were, what we had, and what we wanted to be. 

The pain took so much from me. The hopes and dreams I had before the pain were turned into rubble, yet I couldn’t let them go.

After a tornado the Red Cross comes in, neighbors and churches offer help.

But I find that isn't the case when it comes to chronic pain. Instead, people tend to look away or mouth platitudes, all while pretending our lives haven't been devastated.

I have had the pain for over 40 years. I still don't accept it. I keep looking for the life I expected to have.  It's never there.

Ultimately, the TV character finds one of her treasured belongings in the wreckage of her home.  She is ecstatic and relieved.  She suddenly sees the rest of the damage as merely a chore she has to deal with.

Maybe, just maybe, one day I can do the same.

Carol Jay Levy has lived with trigeminal neuralgia, a chronic facial pain disorder, for over 40 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. 

A Cautionary Tale: Why Lived Experience with Chronic Pain Matters

By Neen Monty,

I went undiagnosed with a serious, painful, progressive and incurable neurological disease for over a decade, because nearly every healthcare professional I saw assumed I was a hysterical woman with a low pain tolerance.

I am not that stereotype. I am the opposite.

Because doctors, GPs, neurologists, rheumatologists, nurses and physical therapists dismissed me and refused to do proper diagnostic tests, I now live with permanent disability and unrelenting, severe pain.

Had I been diagnosed by the first neurologist, the second, or even the third, I would have had a good chance at remission. At not being disabled. At not being in pain for every second of the rest of my life.

Early treatment leads to better outcomes in most diseases. Mine included.

It was assumed that the pain I was describing was from my rheumatoid arthritis. But, because my bloodwork showed no inflammation, it was assumed that I just had a low pain tolerance. And that I was a bit hysterical. A bit of a malingerer. A bit of a pussy.

Never assume.

Never once did they consider I was telling the truth about the severe neuropathic pain I was experiencing.

I was fobbed off by every doctor. I was told I had everything from plain old run of the mill anxiety to a functional neurological disorder. I was referred to a psychologist, who I did consult. But my mental health has no bearing on my pain.

These diagnoses were wrong. Dead wrong. And very harmful.

They made assumptions based on a stereotype I do not fit. They made snap judgments. They failed to do their jobs.

And the price was my life. The quality of my life.

Doctors talk about the fear of making a mistake that kills someone. But they never seem to consider the damage when they condemn you to a life of unrelieved, preventable suffering. They never consider their bias, their laziness, their ignorance, might steal someone’s future. Condemn someone to a lifetime of disability and pain.

Never. Even. Considered it.

But that’s what happened to me.

I am not posting this because I am bitter. I do not dwell on this. I get on with my life, I make the best of what I have.

But my story is important.

It is a very important cautionary tale that more doctors, therapists and health care professionals need to consider: Your mistakes can ruin lives. If you misjudge someone, if you get it wrong, you might be destroying someone’s future. If you write on their file that they are hysterical or a hypochondriac or an addict, every future healthcare professional’s diagnosis will be coloured by your mistake and your misjudgment. You are condemning the patient, and you are preventing them from receiving the care they need.

My lived experience is a warning.

Read my story and ask yourself, honestly, would you have made that diagnosis? Would you have missed that diagnosis? Do you listen to your patients? When treatment fails, do you go back to first principles, start from scratch, and look for an alternate diagnosis? Or do you decide the patient is lazy, non-compliant, hysterical, or lying?

Do you blame the patient? Reflect on that honestly. Ask yourself honestly.

This is why lived experience matters. Why it is essential in patient advocacy. And why so many advocacy organizations are failing. They don’t understand the problems that those of us who live with severe pain face. They speak about us, but not for us.

So please. Read. Reflect. Ask the hard questions. Because it’s not just about life or death.

It’s about the life someone has to live after you get it wrong.

I could have had a normal life.

I didn’t have to be this disabled.

I didn’t have to be in this much pain.

But by the time anyone took me seriously, my disease was long-standing. Entrenched. Irreversible.

Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) is rare, but it is very real. The pain is constant. Every second of my life, I have pain.

And the kicker? No doctor wants to treat it.

No one believes it can be that bad. Not friends. Not family. Not doctors.

Every doctor I saw may not have known exactly which neurological disease was causing my symptoms, but they should have known it was a neurological disease they were looking at. They should have recognized the red flags. They should have followed up.

Instead, they saw hysteria. They saw hypochondria. They saw a woman who was “overreacting.” A woman with “health anxiety.”

CIDP is a horrific disease. It has stolen my life. And it didn’t have to. I am 54 years old. I have been in pain for almost 20 years now. I live with significant disability. It did not have to be this way.

Again, this is not about blame. I am not bitter.

But I ask you to read and reflect. Ask yourself, honestly. Would you have made that diagnosis? Would you?

Neen Monty is a patient advocate in Australia who lives with rheumatoid arthritis and Chronic Inflammatory Demyelinating Polyneuropathy (CIDP), a progressive neurological disease that attacks the nerves.

Neen is dedicated to challenging misinformation and promoting access to safe, effective pain relief. She has created a website for Pain Patient Advocacy Australia to show that prescription opioids can be safe and effective, even when taken long term. You can subscribe to Neen’s free newsletter on Substack, “Arthritic Chick on Chronic Pain.”

How Federal Budget Cuts May Impact Chronic Pain Care

By Mara Baer,

President Trump recently signed a sweeping budget reconciliation bill – known as the One Big Beautiful Bill -- that makes significant cuts to Medicaid of nearly $1 trillion. The legislation will fundamentally change the way Medicaid is administered by states and reduce health care coverage for millions over time.

The Republican-led effort was positioned to reform and right-size the Medicaid program, which over 70 million Americans rely on for healthcare coverage. But the reality is that for many people, including those living with chronic pain, significant losses of access to care and coverage will result. The new law’s provisions will:

1. Establish new work requirements for Medicaid eligibility for people aged 19-64

2. Reduce provider fees and related federal funding, further reducing state Medicaid revenues

3. Mandate more frequent Medicaid eligibility determinations

4. Disallow access to Affordable Care Act tax credits for those failing to meet the new work requirements.

While some of the law’s provisions do not take effect until 2026 or later, states must act now to implement complex and costly requirements. Many have already begun the process. For example, in my home state of Colorado, a special legislative session is being considered to try and tackle some of the financial impacts.

Some of the key direct impacts on people with Medicaid who live with chronic pain include:

• Coverage losses. Work requirements for Medicaid beneficiaries to attest they are working at least 80 hours a month or get a work exemption. High impact chronic pain, which significantly interferes with daily life activity,  already prevents as many as 21 million Americans from working. Their ability to meet the new work requirements will be left to individual states, with some states having more onerous standards than others.

• Widening disparities. Data shows that chronic pain patients on Medicaid have worse pain severity and mental and physical functioning than non-Medicaid beneficiaries. As individuals lose their coverage or have reduced access to pain care, the disparity between these groups will widen. 

• Reduced access to multi-modal care. Research has found that there are disparities in coverage of chronic pain treatments by Medicaid and commercial insurance, with insurers providing more “restorative” therapies, such as physical therapy and chiropractic care. With state budget cuts, states will have to become even leaner in benefit structures and access, leading to possible reductions in comprehensive pain care, further widening the gap in insurance coverage.

• Fewer mental health services. Medicaid is the largest payer for mental health services. Because chronic pain and mental health are so intertwined, pain patients losing Medicaid coverage or experiencing service reductions for mental health face potentially significant impacts. This may include increased need for crisis services and more emergency department services.

With states now having to figure out how to implement these changes, some will have to make hard choices. Will new limits on benefits be required? Will they need to expand the use of prior authorization to help manage costs? Reduce benefits to the adult population? Cut new and innovative health services?

It is hard to know, but any of these issues can hit chronic pain patients particularly hard. Staying up-to-date on what is happening in your state will be important.

In addition to these issues, Affordable Care Act subsidies that help people buy coverage are set to expire at the end of the year. Many anticipate that Republicans in Congress will allow this expiration to happen. Combined with the expected coverage losses from the budget reconciliation bill, the number of uninsured Americans is expected to increase by 17 million.

If we do some basic math, applying the statistic that 1 in 4 Americans live with chronic pain, that’s over 4 million people in chronic pain losing coverage. From my point of view, even one is too many.

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 writes a newsletter on Substack called Chronic Pain Chats.

That Time My Doctor Fired Me as a Patient

By Crystal Lindell

When I first developed chronic pain back in 2013, I had so little experience with our healthcare system that I genuinely thought that all my doctors would do everything possible to help me, like the doctor that Hugh Laurie played on the TV series House. 

The pain I developed came on suddenly and intensely. 

It wrapped around my right ribs like a rusty barbed wire, and I had no idea how to manage it, much less live with it. I just woke up with it one day when I was 29 years old, and it never went away. 

I initially went to the emergency room, where they told me that it was likely an ulcer. But after trying to treat that and still being in horrific pain weeks later, I went to a primary care doctor recommended by a friend. 

The doctor worked for a university hospital near Chicago and, at the time, I still thought that a good doctor would be able to figure out what was going on and be able to successfully treat it. After all, the pain was in such a specific place. Surely there was something they could do? 

But after weeks of multiple rounds of tests and imaging revealed no answers, that doctor started prescribing gabapentin and basically threw up his hands in defeat. 

The only problem was, while he could ignore my pain, I could not. It haunted me. 

The pain was slowly eating away at my life and my will to live. I had a desperate need to find help so that I could survive. 

The pain would keep me up for days on end, and I would sometimes get a friend to drive me to this doctor’s office first thing in the morning, desperate to see him and hoping he would help me. He would usually just increase my gabapentin prescription and send me on my way.  

It didn’t work. So, I kept calling and insisting on more appointments, naively assuming he would help me. 

After a few months of this, he gave me “the talk.” He said there was nothing else he could do for me and that he would no longer be seeing me. 

I was too shocked to even react. How could he give up when the pain was still persisting? How was I supposed to live like this?

He didn’t offer to refer me to anyone else. He just abandoned me. 

One thing you learn quickly as a chronically ill patient is that doctors hold all the power. If one decides to fire you as a patient, you don’t have much recourse. It doesn’t matter if you still need their help – they won’t be giving it to you. 

I’m sure the fact that I kept insisting on appointments annoyed him. But while he was facing annoyance, I was facing agony and desperation. I didn’t know what else to do. I needed his help, even after he stopped giving it. 

Out of necessity, I decided to uproot my life and move back in with my family, so that I could scale back how much I was working and focus on trying to figure out what was going on with my body. 

I eventually connected to a new doctor at a different university hospital and, thankfully, he did not give up on me. In fact, he was able to get me onto an opioid-based treatment plan that I still use today. He was able to give me back my will to live, and I still see him for my pain now.

My pain was eventually diagnosed as intercostal neuralgia, likely linked to my other eventual diagnosis, Ehlers-Danlos Syndrome. I still suffer from the pain today, but it’s much better managed. 

If you scroll through any online chronic illness group, you’ll find that a lot of other patients have also been fired by their doctors. 

I’m not sure what the solution is. After all, if a doctor doesn’t want to treat you anymore, it’s probably in your best interest to stop seeing them – they just hold way too much power over your body. 

But unfortunately, as it stands, they are able to leave you out in the cold with no alternatives for medical care. And if you’re suffering from a serious health issue, finding a new doctor can feel overwhelming and near impossible. 

Doctors should be required to refer your case to someone else if they want to fire you as a patient. They should have to help make sure that you’re still receiving healthcare, even if your condition is not acutely life threatening. 

I still wish the real world was filled with doctors who were as tenacious as Dr. House, but since it’s not, patients need more well-enforced rights. 

While doctors have the luxury of deciding which patients they will treat, patients are stuck living with the body that still needs treatment.. 

If we as patients aren’t allowed to give up on our health, doctors shouldn’t be allowed to give up on us.

RFK Jr. Wants Everyone To Use Health Wearables. Should Patients Be Worried?

By Crystal Lindell

Call me a conspiracy theorist if you want, but I’m skeptical about a governmental push to get everyone to use health wearables. 

How much day-to-day or even minute-to-minute data do we really need about patients? And how much health data do we really want stored in the data cloud in the sky, for anyone to access? 

Health wearables is a broad category that typically includes everything from Apple Watches to blood glucose patches. And Robert F. Kennedy Jr., Secretary of Health and Human Services, has launched a new initiative to get everyone to use them. 

He spoke about it during a recent hearing of the House Subcommittee on Health, as reported by ABC News. 

"It's a way … people can take control over their own health," Kennedy said. “They can take responsibility. They can see, as you know, what food is doing to their glucose levels, their heart rates and a number of other metrics as they eat it, and they can begin to make good judgments about their diet, about their physical activity, about the way that they live their lives.

"We think that wearables are a key to the MAHA agenda -- Making America Healthy Again. My vision is that every American is wearing a wearable within four years."

It might sound good at first. After all, a continuous glucose patch is more convenient for a diabetic than having to constantly prick their finger for their glucose readings. 

But I think patients should remain skeptical of such a push for more health wearables – especially when it's coming from the government. 

First, I do think there’s such a thing as too much data. Most people don’t need to know exactly what their blood glucose level is at every moment of the day. I have relatives who’ve used glucose patches, and not only were the readings often inaccurate, but the very expensive patches were also hard to apply and fell off early.

In other words, having continuous data does not inherently make a health monitor better than alternatives. 

Also, having access to how many steps you’re taking daily or what your heart rate is during a workout can quickly turn into an obsession, trying to get arbitrary numbers to show up on your device. 

Can Tech Be Trusted?

Beyond that though, I do think people should be skeptical about multiple stakeholders having access to a bunch of our health data. 

Tech companies that create the devices can’t be trusted to use the data responsibly or to keep it private. They already routinely hand over cell phone data to law enforcement agencies. 

Recently a bankruptcy judge approved the sale of 23andMe's genetic data on 15 million people to a research institute. Many of those users are now scrambling to delete their data before the sale is completed. 

I’m also not convinced health care providers can be trusted with it either. I can imagine a world where doctors look at heart rate data from your Oura Ring and declare that it’s too steady, and thus you must not really have chronic pain. 

Patients will never win though, as I’m sure doctors will be just as likely to dismiss data that would show that your pain is legitimate as “some gimmicky” information from a tech company. 

And God forbid they create a mass-produced device that can measure something like opioid use through our sweat and then make pain patients wear it to show doctors if they’re using their medication exactly as prescribed.

That’s not so far-fetched. Years ago, a tech company developed an experimental wristband device that tracked skin temperature and movement, and tested it on ER patients given opioids for acute pain. The theory was that opioid users are more likely to fidget or show restless activity when they feel it’s time for another dose, so that would be an easy way to track their opioid use.  

More recently, another company has been developing a smartphone app that can evaluate your health and vital signs just by analyzing a selfie image taken by the camera on your phone.

But again, it’s the fact that this whole push for more wearables is coming from a government agency that should really alarm people.

If they gain access to it, they could use it to kick people off programs like Medicaid, increase insurance premiums, and potentially even arrest people. I especially worry that low-income patients could be coerced into using health wearables in order to continue to qualify for benefits and access to services. 

Remember the COVID vaccine conspiracy theory that the government was using the vaccines to inject small microchip trackers into everyone? It was obviously untrue, but now the government literally wants everyone to wear health trackers. That should alarm anyone who was ever concerned about governmental surveillance.

My advice to patients is to resist using too many health data trackers. Yes, they can be helpful in some cases. But there is a point where both the wearer and the monitors have too much access to data. 

At the end of the day, the real question is, who will be tracking the health trackers?

When Doctors Don’t Care: The High Cost of Untreated Pain

By Neen Monty

I just returned from seeing my GP.

I explained to her what happened while she was away — that the doctor who filled in for her refused to prescribe the full amount of my pain medication. As a result of being shortchanged, I went through four days of untreated, severe pain.

My GP said nothing.

I asked why the other GP said she couldn’t prescribe. My GP responded with, “I can’t comment on that.”

I was wondering who was lying to me, and assumed it wasn’t my GP. My GP believed my medications would be prescribed, in good faith.

They weren’t. The other GP lied to her.

And in doing so, she knowingly left someone with a painful, progressive, incurable disease to suffer in agony. Because she could. That’s not medicine. That’s abuse.

That GP should not be practicing.

The most fundamental job of a doctor is to relieve suffering. To relieve pain.

We are now in a world where doctors refuse to treat pain -- and most other doctors say nothing about it. There are no consequences for being derelict in their duty of care.

We’re in a world where people with long-term diseases and permanent disability are being left in agony, discarded by a medical system that sees us as burdens, not as patients. We are not being treated, we are being tortured.

Doctors who refuse to treat pain in people with serious, documented illness are not neutral. They are sadists. And they have no business practicing medicine.

I’m not talking about someone with a mild headache or a sore knee. I’m talking about severe, constant, intractable pain. Pain from MS, RA, Parkinson’s, adhesive arachnoiditis, spinal cord injuries, cancer, and many, many more horrible diseases. Diseases that destroy lives.

And yet, doctors are allowed to ignore us. Abandon us. Deem us unworthy of relief.

Like I was.

My own GP, who knows me and knows my history, did nothing. She simply "fixed" the problem by giving me the rest of my prescription: 90 tablets. Enough for 14 days.

But where was her anger? Her outrage? She promised I’d be looked after while she was away. I wasn’t.

She was betrayed by this other GP as much as I was. But she said nothing. She will accept that this other GP decided not to treat my pain and won’t mention it at all.

And next time my GP goes away? What then? I can’t see the other GP again.

Insult to injury is that I’ve now had to pay for three GP visits this month. That’s $180 I didn’t have.

I endured four days of relentless, unmanaged pain. Because one GP decided I don’t matter.

Because she looked at me and saw garbage. Not a person. Not worthy of her time. Her disgust and disdain towards me were open and palpable.

And no one held her accountable. No one will hold her accountable. She is a law unto herself.

If you ever wondered what it feels like to be dehumanized in real-time, to be made invisible because you're sick and in pain, to be deemed worthless, this is it.

I am very unwell. And I’m in a lot of pain. When pain goes untreated for many days in a row, it is not so easy to get it back under control again.

Treating pain patients like garbage has to stop!

Neen Monty is a writer and patient advocate in Australia who lives with rheumatoid arthritis and Chronic Inflammatory Demyelinating Polyneuropathy (CIDP), a progressive neurological disease that attacks the nerves.

Neen has created a website for Pain Patient Advocacy Australia to show that prescription opioids can be safe and effective, even when taken long term. You can subscribe to Neen’s free newsletter on Substack, “Arthritic Chick on Chronic Pain.”

OxyContin Fueled the Opioid Crisis, But Not How You Might Think

By Crystal Lindell

Attorneys General from 55 U.S. states and territories recently accepted a $7.4 billion settlement with Purdue Pharma and the Sackler family, potentially ending over a decade of legal wrangling over the company’s role in the opioid crisis.  

But much of the media coverage still doesn’t seem to grasp what Purdue Pharma actually did wrong with its marketing of OxyContin. Purdue Pharma’s original sin was not flooding the market with too many OxyContin pills – it was too few.

OxyContin’s share of the opioid market was never more than 4 percent. That small share, however, was magnified by higher dose pills, which made OxyContin more likely to be misused. 

The company drove misuse by claiming that OxyContin pills lasted for 12 hours. In reality, they only lasted 4-6 hours. I know, because I’ve been on them myself for chronic pain.

This is how the Los Angeles Times described Purdue’s marketing campaign in 2016: 

“Purdue tells doctors to prescribe stronger doses, not more frequent ones, when patients complain that OxyContin doesn’t last 12 hours. That approach creates risks of its own. Research shows that the more potent the dose of an opioid such as OxyContin, the greater the possibility of overdose and death."

So if a patient wasn’t getting steady relief from two 10mg OxyContin a day, the doctors would be encouraged to up it to two 20mg OxyContin pills a day. In reality, it would have been better to keep the dose at 10 mg and increase the frequency to four pills a day.

Purdue was well aware of the problem. They knew the pills did not last the full 12 hours. But it was OxyContin’s 12-hour dosing regimen that was its main selling point. It was supposed to set it apart from much cheaper opioid options like hydrocodone, morphine and oxycodone. 

Here’s what happened when doctors prescribed more OxyContin pills to give patients relief, according to the LA Times:

“When many doctors began prescribing OxyContin at shorter intervals in the late 1990s, Purdue executives mobilized hundreds of sales reps to ‘refocus’ physicians on 12-hour dosing. Anything shorter ‘needs to be nipped in the bud. NOW!!’ one manager wrote to her staff.”

Purdue then encouraged doctors to prescribe higher dose 80mg pills, because the higher the dose, the more Purdue made off the pills. While the company charged wholesalers about $97 for a bottle of 10mg pills, a bottle of the 80mg version went for $630. 

The company also based the commissions and performance evaluations for its sales team on the proportion of high-dose pills they sold. 

‘The Dose Makes the Poison’

Over 500 years ago, Swiss physician Paracelsus coined the phrase, “The dose makes the poison.” For Purdue Pharma, that was especially true. It was the high doses at long intervals that made OxyContin so dangerous.

Patients would go through cycles of withdrawal as their high doses wore off early, or they would just take a few extra pills each day. That meant they would run out of their prescription early, leaving them to go through days or even weeks of withdrawal. 

And make no mistake, even short intervals of withdrawal from 80mg OxyContin would make anyone feel like hell. God forbid you run out early and have to go through that. It’s the perfect recipe for driving patients to seek other sources of relief, whether that means buying pills from someone else or buying street opioids. 

Understanding that the root cause of OxyContin’s danger was not that doctors were prescribing too many pills, but prescribing too few of them challenges the popular narrative of how the opioid crisis started.  

The actual problem was not that doctors were treating pain with opioids. They were treating pain with opioids at the wrong intervals. 

Media coverage of Purdue still often frames OxyContin as the same as every other opioid though. But OxyContin isn’t fentanyl and it’s not hydrocodone, either.

Low and frequent doses of hydrocodone are relatively safe for the vast majority of patients. Which makes sense, since the reason OxyContin led some patients to misuse was because it was literally the opposite: High doses taken infrequently. 

That message seems to get lost in current opioid-phobia coverage. Just last week, the LA Times ran a column headlined, “Surgeons give patients too many opioids. A few simple steps could curb excess prescribing”

The column is authored by Zachary Wagner, PhD, a health economist at USC, and Craig Fox, PhD, a psychology professor at UCLA who specializes in studying behavioral risk. Neither of them are medical doctors.

In their op/ed, Wagner and Fox spread the misinformation that it’s leftover post-op pills that are driving opioid deaths. They think surgeons should be encouraged to prescribe fewer opioids. 

“If we could get surgeons to prescribe only the number of pills patients need for their own use, this could greatly reduce the number of excess pills available for diversion and misuse,” they wrote. 

This is dangerous and misleading. Opioids are so difficult to get today that pain patients are far more likely to hoard their “excess pills” than to sell or divert them. Opioid diversion rates are quite low, according to the DEA, which estimates less than half of one percent of oxycodone (0.493%) and hydrocodone (0.379%) are used by someone they are not intended for. 

Do surgeons really need lectures from economists and psychology professors about what they should prescribe?

I have seen first-hand how many surgeons already give post-op patients a regimen of only ibuprofen or acetaminophen due to opioid-phobia laws and regulations. Providing adequate post-op pain relief isn’t just the ethical thing to do, it’s also important for the healing process and to prevent acute pain from becoming chronic.. 

The bottom line is that pain refuses to be ignored. People will find ways to treat it, regardless of whether or not their doctor helps them. Simply refusing to give people opioids won’t solve anything. It will, however, drive people to street drugs or to self-medicate with alcohol and other substances. 

If doctors actually want to help patients, they should still be prescribing low-dose opioids, which are relatively safe. And they should prescribe high-dose opioids to people who really need them, just at realistic intervals.

Purdue Pharma’s sins were real – but letting that justify complete bans on pain treatment only results in more suffering, not less.

Will FDA’s New Review Process Sell Drug Approvals to the Highest Bidder?

By Crystal Lindell

The U.S. Food and Drug Administration has launched a new speedy review process for new medications, dubbed the Commissioner’s National Priority Voucher (CNPV) program. 

The FDA claims the program will speed up the approval process for pharmaceutical companies looking to get a new drug on the market – but it remains unclear whether it is based on a need for the drug, its effectiveness, or how much companies are willing to pay for the privilege of early approval..

The FDA said the CNPV program will shorten the review time to 1-2 months, compared to the typical 10-12 months it usually takes after a company’s final drug application.

They’ll accomplish this by allowing for a “team-based review.” This differs from the current process, where a drug application is “sent to numerous FDA offices” to give them a chance to weigh-in.

The program will even allow companies to submit the lion’s share of the drug application before a clinical trial is complete, according to FDA Commissioner Marty Makary, MD.

“Using a common-sense approach, the national priority review program will allow companies to submit the lion’s share of the drug application before a clinical trial is complete so that we can reduce inefficiencies. The ultimate goal is to bring more cures and meaningful treatments to the American public,” Makary said. 

Neither the FDA press release about the new program or its "Frequently Asked Questions" page specify how much this new program will cost companies interested in participating. 

We can gain some frame of reference by looking at what the existing Priority Review and Priority Review Voucher costs for companies, as well as what their true value is. 

While the FDA charges companies about $2.5 million for those vouchers, according to the General Accounting Office (GAO) they have been resold on the secondary market for as much as $350 million. The GAO found that of the 31 vouchers awarded by the FDA between 2009 and 2019, over half (17) were sold to another drug company.

The new vouchers cannot be transferred to other companies as of now, but with so much money at stake, you have to wonder if there will be a valuable aftermarket for them.

Even if the new vouchers themselves are reasonably priced, my guess is that they will be more likely to go to companies that donate money to elected officials or are politically favored. 

The FDA says that in the first year of the program it will give a limited number of vouchers to companies “aligned with U.S. national priorities,” which include “unmet public health needs” and increased domestic drug manufacturing. But then they also say the vouchers “can be applied to drugs in any area of medicine.”

In other words, basically any medication would qualify. There’s not much else to explain just how vague the criteria is for receiving the vouchers.  

And if any medication would qualify for the new vouchers, it makes sense that the ultimate qualification would be what companies are willing to pay to get them. 

Under the current voucher system, the GAO found there is “no obligation to make the approved drug available at an affordable price,” so companies are free to limit access and charge whatever they want. The new voucher system also has no requirement that new drugs will be affordable or accessible. 

While I do understand the need for more efficiencies in the drug review process, when those efficiencies are applied unevenly, it inevitably invites corruption. And the last thing we need when it comes to prescription medications and healthcare in our country is more corruption. 

My concern is that the drugs getting speedy review won’t actually be the ones that are in the public’s best interests, but rather the ones that best serve the interests of our elected officials and the drug companies themselves. 

And when it comes to prescription medications, we all know that what’s best for politicians and the pharmaceutical industry is not what’s best for patients.

A Pained Life: Stop Torturing Us

By Carol Levy

For many chronic pain conditions, such as Complex Regional Pain Syndrome, trigeminal neuralgia and Ehlers Danlos Syndrome, a major aspect is the spontaneity of pain attacks. They can come at any time and without warning.

Not being able to anticipate a pain flare may sound familiar to you. It causes psychological stress, keeping you in a constant state of fear and anxiety. The lack of predictability deprives a person of any sense of normalcy or control over their situation, causing helplessness and despair.

That often leads to other health problems and interrupts the sleep cycle, causing fatigue, disorientation and even cognitive decline. 

Where did this description of chronic pain come from?

It is actually a description (with some word modification) of torture and how disruptive it can be to a person. It’s striking how similar chronic pain and torture can be.

Having chronic pain is torture to me in an abstract way: I have pain. I can't find a way to stop it. I suffer as a result.

Like pain, torture is worse when it arrives unexpectedly and you have no way to stop it. You may be feeling okay, when suddenly a blitzkrieg of pain invades. You have no control or defense, and have no choice but to wait it out, cowering under the covers waiting for it to pass.

The Center for Victims of Torture writes this about using unpredictability as a torture technique:

“Randomizing torture makes it even more psychologically damaging and ethically problematic, as it deprives the victim of any control or predictability.”

Too often doctors miss the ethical implications of the effect of the pain on us, much less when one aspect of it is the unpredictability. The need for them to understand it is a necessary component of taking care of us and our needs --- what a physician, in the truest sense of the word, should do.

Too many of them, even those who claim “pain management” as their specialty, seem to get tired of listening as we explain the various ways our pain manifests. Most pain conditions don’t have a nice clean orderly way of detail.

It can be torturous to deal with the medical profession and its reluctance to accept our stories about living with chronic pain. It is harder still when a patient has the additional spontaneity of pain, being repeatedly physically and psychologically bombarded by it, and their defenses on the verge of being destroyed.

Doctors don’t seem to be able to understand this on their own. We may come to them psychologically tattered because of the pain. Those of us with spontaneous pain may come to them appearing very emotionally fragile.

As hard as it is, as difficult our lives already are due to the pain, we may have to be the ones to teach them, to help them to understand why we are so torn and battered. At the end of the day we need to tell them: “Please, listen to me. Understand me. Please, don’t be another level of torture.”

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. 

5 Cool Things to Help You Endure Summer Heat With Chronic Pain

By Crystal Lindell

As temperatures heat up this summer, it can be difficult to get through hot sunny days when you’re also dealing with chronic pain and chronic illness. 

Weather is such a huge factor in the severity of day-to-day chronic pain levels, and if you’re on certain medications heat can also impact your body in other ways, like skin irritation and ankle swelling. 

Here are 5 things I use to get through the summer months while also dealing with chronic pain and chronic illness. 

Gold Bond Friction Defense Stick

My number one summer survival item is the Gold Bond Friction Defense Stick. I use it on my arms and thighs to prevent the heat and humidity from chaffing my skin if I’m wearing shorts, a tank top, a bathing suit or any light summer clothing. 

And this stuff seriously works! Putting it on after my morning shower makes such a huge difference in my quality of life throughout the summer. 

If you have a long day of walking, or swimming you may need to re-apply a few times, but for most day-to-day activities, I have found that once in the morning is more than adequate. 

Find it on Amazon here.

Compression Socks

Every summer my excessive ibuprofen use combines forces with my Ehler-Danlos Syndrome to make my ankles swell up – especially if the humidity is high.

So I swear by these compression socks, which virtually eliminate that symptom, even after long car rides. I have multiple packs of these in multiple colors, and throughout the summer months, I wear them almost daily. 

No, they aren’t super stylish with shorts, but if you wear them underneath pants, nobody can even tell. 

Find them on Amazon here. 

Light, Airy Pants

Speaking of pants, I tend to prefer them to shorts most of the time, even in the summer months. And these light, airy pants are great for enduring the heat. 

They offer all the comfort of pants, with all the breathability of shorts. I use them as pajamas, as well as pants to wear over my bathing suit at the pool, and even for lounging around during the day.

According to my Amazon order history, I have literally ordered these pants eight times! I have them in every color and even in multiple sizes. They’re also great at enduring weight fluctuations that are common when you’re on a lot of medications and dealing with chronic pain because of how stretchy the waist is. 

But the best things about these pants might be that they have pockets! If you’re familiar with the world of women’s pants, you know just how valuable and rare that feature is! 

Find them on Amazon here. 

Adjustable Fan

Sometimes chronic pain and related medications make us especially sensitive to heat and humidity, but a personal, adjustable fan can be a great way to cope. 

We have this fan in multiple colors, and we use them throughout the summer to direct air flow exactly where we want it. 

It’s relatively quiet for a fan, but it still packs a punch when it comes to cooling you off during the summer months. 

Find it on Amazon here. 

Summer Reading Club

If you’re looking for a comforting summer read, I can’t recommend “Garden Spells” by Sarah Addison Allen enough. It’s a very light, easy read that follows the stories of two sisters who have to navigate common sibling friction with the added stress of coming from a magical family that the whole town thinks is “weird.”

I read it for a book club recently and flew through it in two days. It’s a great light read, even if you’re have a chronic pain flare and can’t get off the couch. It also takes place in the south, and the heat is a common theme, making it perfect for getting into the summer state of mind.

Find it on Amazon here. 

What products do you use to get through the hot and humid summer months while dealing with chronic pain? We’d love to hear your recommendations in the comments below! 

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