What Would Sherlock Holmes Say About the Opioid Crisis?

By Carol Levy, PNN Columnist

“It is a capital mistake to theorize before you have all the evidence. It biases the judgment.” — Sherlock Holmes

It is also a mistake to mischaracterize or lie about evidence. But this is what is happening with the opioid crisis and with pain patients. Here’s an example of theorizing about opioids by Johns Hopkins Medicine in “The Science of Addiction.”

“For some time in this country we believed patients weren’t at risk of addiction. No one knows for sure the percentage of those who are at risk. What we do know now through an annual survey of drug use in the U.S., when people were asked if they had used heroin, researchers found that 50 percent of those who had also had a longtime history of opioid use and 50 percent of those went on to have problematic heroin use.”

One would have hoped Johns Hopkins would do better than “No one knows for sure” and then openly theorizing that pain patients inevitably become addicted to opioids and that many turn into heroin addicts.

There is no explanation of who had a “longtime history of opioid use,” what type of opioids they started with, or why they turned to heroin. But this is the kind of public messaging we see all the time about opioids and pain patients. 

Recently on the KevinMD medical blog, a pediatrician posted his story of the struggles he had as a medical student and doctor getting diagnosed for fibromyalgia. He also wrote about the problems he had getting appropriate treatment and how many of his colleagues were questioning whether fibromyalgia was “real” or not. 

A physician left a comment to the article (since deleted) saying this: “In my experience with musculoskeletal disease, at least 50+% of those who have been given the diagnosis, really don't have a disease other than secondary gain, ie, disability and pain meds.”  

I replied with a comment of my own: “It sounds like you have a bias against those whose complaint is body pain; and I have to assume that includes those with dx (diagnosis) of fibro and CRPS. It is people like you who make it so much harder for people like us to get proper care from the medical community.”  

The physician responded with: “You're probably partially right.” 

It’s a sad commentary, but a perfect example of a doctor theorizing about his patients with no data or evidence, except that they are coming to him with a pain complaint. We know the problems with both issues: Pain patients are given opioids. There is an opioid crisis. Who better to go after than people who need opioids for a medical reason? 

Our pain is invisible. Doctors mostly have to rely on what we tell them about our pain. It is a lot easier for them to say, “I don’t believe this patient” than to take the time to truly evaluate not only our pain, but what it has done to our lives. How our functioning and interacting in the world has been impacted by the disability caused by the pain. That is evidence. Disbelief is merely theory. 

This reminds me of another Sherlock Holmes story:

 Holmes and Watson are on a camping trip. In the middle of the night Holmes wakes up and gives Dr. Watson a nudge. "Watson," he says, "look up in the sky and tell me what you see."

"I see millions of stars, Holmes," says Watson.

"And what do you conclude from that, Watson?"

Watson thinks for a moment. "Well," he says, "astronomically, it tells me that there are millions of galaxies and potentially billions of planets. Astrologically, I observe that Saturn is in Leo. Horologically, I deduce that the time is approximately a quarter past three. Meteorologically, I suspect that we will have a beautiful day tomorrow. Theologically, I see that God is all-powerful, and we are small and insignificant. Uh, what does it tell you, Holmes?"

"Watson, you idiot! Someone has stolen our tent!”

Like Watson musing about the stars, we are constantly told that opioids are addictive and therefore patients on opioids must become addicted. They can't see our pain on an x-ray or in our blood work, so therefore it must not exist.

I'll give Mr. Holmes the last word: “There is nothing more deceptive than an obvious fact.”

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.”

Finding Hope in the Strange Medical Saga of Howard Hughes

By Donna C. Gregory

During much of the 20th century, Howard Hughes was known as a risk-taking aviator, award-winning filmmaker and playboy to Hollywood starlets. But there was another side of Hughes’ life that only his physicians and those closest to him knew.

There was actually a medical reason behind Hughes’ odd, daredevil personality. He lived with obsessive-compulsive disorder for most of his life, and that condition likely contributed to him sustaining multiple traumatic brain injuries and ultimately developing intractable pain syndrome in his later years.

During the 1950s, when Hughes disappeared from public life, most people believed his reclusive lifestyle was due to his eccentric personality, when in fact he was so debilitated by chronic pain that he was mostly housebound.

Forest Tennant, a retired physician who specialized in addiction and pain medicine for most of his medical career, has investigated Hughes’ medical history for nearly 50 years. In 1978, Tennant testified as an expert medical witness in a lawsuit related to the cause of Hughes’ death.

Now, more than 40 years later, Tennant has chronicled Hughes’ fascinating medical history into a new book entitled, “The Strange Medical Saga of Howard Hughes.”

I recently spoke with Tennant about his book. We hope you enjoy this long-form interview.

During the 1970s, you were an expert witness during a lawsuit related to the cause of Howard Hughes’ death. What inspired you to write the book now?

Forest Tennant: We did not know, from a medical point of view, what happened to Howard Hughes because we didn't understand his injuries. We knew that he was ill. We knew he was sick. We knew he was a recluse. He had all these different problems, but we really didn't know what had happened to him. We didn't understand intractable pain syndrome and traumatic brain injury until just in recent years.

The second reason why I've chosen now to write it is that it dawned on me that I have all this information, and I now have the time to do it and the interest. A few years ago, I wrote a small paper about Howard Hughes, Elvis Presley, John Kennedy and some of the other famous people who had pain problems, and it was such a hit that I decided to take what I know before I pass on and get it down and write it so it will be kept for posterity.

I've come to realize that some of these famous people have these strange medical sagas. Bizarre medical histories should be put down as history and cataloged as history for the future.

[There’s a] third reason why I decided to write [this book] now. I think everybody who has one of these conditions ought to read [about] their history.

Why do you think it’s a good idea for people with traumatic brain injury, intractable pain syndrome or obsessive-compulsive disorder to read your book?  

First off, it'll give you hope. I think one needs to understand that there was a man who suffered terribly and was able to function and perform beyond any human expectation despite being terribly ill.

I think that's a point that's gotten lost in all the glamour and the money and the politics of the day. People forget that sometimes somebody who's terribly ill, has pain and suffering, but still wants to contribute, can do it.

Howard Hughes had the money to hire the best [physicians]. He got the best medical care there was. People [today] think in terms of one drug for this illness, one vaccine for this virus [but physicians back then] just didn't prescribe medicines or give a shot. They were real doctors who did a lot of different things to help people survive to the maximum that their diseases would allow, and I think that this is very important for people to understand.

And Howard Hughes, you just couldn't find a better story or a person who survived against all odds.

After about ten years [following his plane crash in 1946], here was a man who could hardly be in the public. He's in pain. He can't even cut his fingernails or comb his hair half the time because it hurts too bad. He obviously can't have a marital life. His sex life is gone. He can't work normally.

Yet he decides ... in 1966, at age 60, to change his career. He decides he's going to give up aircrafting and making drones and financing all that stuff and move to Las Vegas. Go into creating a new Las Vegas, which exists to this day. For someone at his age to do that, and as sick as he was, is amazing.

Even though Hughes was amazingly successful throughout his life, how debilitated do you think he was as a result of living with traumatic brain injury, intractable pain syndrome and obsessive-compulsive disorder?

He had five airplane crashes and survived. They say cats have nine lives. I think I said in [the book that] Howard Hughes must have been a buddy of those cats.

About 10 years after his last crash, he was … homebound or bedbound and in palliative care. He also got to the point where he couldn't walk after his hip surgery, so he was quite debilitated. People think that he was just a recluse because he was a nutty character, but after about age 55, he was really not very capable of showing up in the public, and he didn't.

People that I have treated, and I've treated many who are about as sick as he was, they all are homebound or bedbound. They're not interested in going out to a lot of social events or even shopping. They're pretty reclusive.

In his case, he could afford a luxury suite in a hotel with the best doctors and aides. Somebody wrote a book and said, "Howard must have been very miserable and sad and alone." This guy had people around him right up to the day he died and the best hotels, the best food and everything. A lot of people would trade their nursing home for what he had!

That's definitely a different way of looking at Hughes. Most of the general public just thinks he was eccentric but that’s not why he was a recluse, was it? It was actually because he was living with severe chronic pain.

Another thing, in those years there was no treatment for these things. Nobody knew how to treat obsessive-compulsive disorder. Incidentally, he started taking Valium when it came on the market. His doctors prescribed it to him in about 1962 or 63. He actually started to function much better.

But again, he's having to take codeine every couple of hours. He takes Valium. He overuses medicines at times, but he was also legitimately sick with his traumatic brain injury, his obsessive-compulsive disorder and his intractable pain syndrome. He had three terrible conditions which, at the time of his life, no one knew how to treat any one of the three.

He was obviously very, very wealthy, and he was able to afford the best doctors in the world. But I think it's interesting, and this happens even today, that even if you have all of the money in the world, sometimes the best doctors still can't get you well. This was the case for him, wasn’t it?

Oh, absolutely. They were the very best doctors that Los Angeles had to offer. They were highly qualified. Incidentally, I'm the last person to probably ever talk to his last three doctors, the three doctors that were caring for him when he died. I got a chance to meet all of them and talk with every one of them, and these were first-class doctors.

They just told me they knew two things about his case. They knew that he had a strange medical condition. They knew that he was different but they didn't know why. So fundamentally, they were treating symptoms as they came up with Hughes.

They did a good job of treating what they knew and what they could do. It's always great to sit here 30 years later and say, "Oh, the doctors should've done this and done that," but you'd better ask the question was that medicine or that procedure even known at the time? And, in Hughes' case, it just wasn't.

How would his treatment differ today?

Oh, dramatically. I am sure that he would've been put on medicine to control his obsessive-compulsive disorder, probably in his teens or in his 20s. It was his obsessive-compulsive disorder that was his undoing.

In 1929, he was done making this film, “Hell's Angels,” and you'll see it in the book he decides to fly this scout plane. All the experts told him, "Don't fly that plane under 200 feet above the ground [because] it's going to crash."

Well, [with] his obsessive-compulsive disorder, [his viewpoint] was, "You can't tell me what to do. I know everything."

So he goes ahead and does it, and sure enough he crashes and has head trauma. After that, he was never the same.

But I think as bad of obsessive-compulsive disorder as he had, today I am sure that he would've gotten into the hands of a good psychiatrist or a good neurologist or even internists today and put on some of the medications that are available for that condition. [If that had happened], he may never have had all those head traumas. You'll see in the book how many traumatic instances this guy had.

The medications that he was given, the codeine for intractable pain syndrome, is not a very good medication. Of course, back then, there was no such knowledge on intractable pain. There was no such knowledge of long-acting versus short-acting opioids or neuropathic agents, to say nothing of other new drugs we're using. So it would’ve been a whole different situation.

My hope is when doctors read [the book], they would understand that Howard Hughes would not have to end up like he did with today's treatment. I think that's one of the bottom lines, medically, of his history. You don't have to end up like Howard Hughes because we have the technology to take care of it.

And also, modern medicine is highly criticized, like practically everything today, but so many advances have been made in the last generation or two that you don't have to see what happened to Hughes. He would have gotten treatments that would be quite different. I think that the medical profession and even the pharmaceutical profession can give themselves a little pat on the back after you read about these cases because we have things that we can do now.

So he may not have ended up with the traumatic brain injuries and the intractable pain syndrome if his obsessive-compulsive disorder was properly treated back then?

Absolutely. That was his undoing. It's kind of harmless to see somebody putting their peas in a straight line or compulsive hand washing and that type of thing but the bad part of it is you lose your ability to do rational thinking. That's what got him into trouble. His total lack of following protocol in 1946 is what gave him that terrible crash that put him into intractable pain syndrome and reclusivity.

He had all this engineering genius, but he just made terrible, irrational decisions at times, like flying that airplane when all the best pilots in the country told him, "Don't do it. That plane won't make it." But he wouldn't take advice.

So those are the kinds of things that get people into traumatic brain injuries. Then, when you get traumatic brain injury, you're even more impaired mentally.

Some of the things this guy did were just unbelievable. Crazy things like he only had 30 minutes of gas, but he tried to fly it 40 minutes. They weren't supposed to fly with the wheels up, so he put them up. There's a whole list of things he wasn't supposed to do that he did, and that's not normal mentally. He wasn't just eccentric. He really was mentally impaired. I'm surprised somebody hadn't shot him or [that he hadn’t] done himself in.

His behavior actually got better after he got on his medication for his pain. His codeine and his Valium seemed to control his bad behavior to some extent.

How did people’s opinions of opioids differ back then compared to now?

Back then, Dr. Mason, [one of Hughes’ doctors] told the press one time in about 1947 or so, "Yeah, we give him the codeine because he's in pain and needs them."

That was the end of the discussion. In other words, when I got into this business in the 1970s after Vietnam, we didn't have all this controversy [about prescribing opioids]. The emotionalism, the condemnations of both physicians and patients, the hysteria of opioids, this is new in society. There wasn't near that kind of stigma back in Howard Hughes' day.

Sounds like things were much easier back then.

Much simpler and much better. We did much better pain treatment for many severe cases in the 1970s and 1980s than we do today.

Today, everybody has an opinion and nobody agrees. I'm kind of hoping that when people read about these famous people who all took narcotics for pain that maybe the patients won't feel so bad. Maybe the doctors will also see something.

It's probably Pollyanna-ish thinking, but I would hope the history of these famous people who Americans revere might bring a little tranquility and some common sense to the use of opioids. We're still going to need them. We can't get along without them. We're certainly decreasing use of opioids for good reason. We're getting alternatives for a lot of patients, but they're still going to be needed for some people.

“The Strange Medical Saga of Howard Hughes” is available for purchase on Amazon.com and BN.com. In the future, Tennant plans to release the strange medical sagas of John F. Kennedy, Elvis Presley and Doc Holliday. All proceeds go to the Tennant Foundation, which gives financial support to Pain News Network and sponsors PNN’s Patient Resources section.   

Donna C. Gregory was diagnosed with fibromyalgia in 2014 after several years of unexplained pain, fatigue and other symptoms. She was later diagnosed with chronic Lyme disease. Donna covers news, treatments, research and practical tips for living better with fibromyalgia and Lyme on her blog, FedUpwithFatigue.com. You can also find her on Facebook, Twitter and Pinterest. Donna is an award-winning journalist whose work has appeared online and in newspapers and magazines throughout Virginia, Delaware and Pennsylvania.

How Do Opioids and NSAIDs Compare for Chronic Pain?

By Roger Chriss, PNN Columnist

With the ongoing push to reduce opioid prescribing because of the risk of addiction and overdose, claims that non-steroidal anti-inflammatory drugs (NSAIDs) like ibuprofen are better have become common.

Dr. Andrew Kolodny, founder of Physicians for Responsible Opioid Prescribing (PROP), recently claimed that “NSAIDs are as effective and in some cases more effective than opioids, even for excruciating painful conditions.”

But it’s not that simple. There are few research studies that directly compare opioids and NSAIDs, and little progress has been made since I wrote about this issue in 2017.

The best we can do is to look at Cochrane reviews of opioids and NSAIDs for specific types of pain management. The Cochrane organization provides unbiased, systematic reviews that are widely accepted as gold-standard evidence.

Cochrane on Opioids

A 2010 Cochrane review found that that opioids for long-term non-cancer pain may be useful in select patients and that opioid addiction was rare.

“Many patients discontinue long-term opioid therapy (especially oral opioids) due to adverse events or insufficient pain relief; however, weak evidence suggests that patients who are able to continue opioids long-term experience clinically significant pain relief,” the authors concluded. “Many minor adverse events (like nausea and headache) occurred, but serious adverse events, including iatrogenic opioid addiction, were rare.

More recent Cochrane reviews found that opioids provide some benefit for restless leg syndrome and rheumatoid arthritis, but little for osteoarthritis.  For neuropathic pain, the results are mixed.  

“Short-term studies provide only equivocal evidence regarding the efficacy of opioids in reducing the intensity of neuropathic pain. Intermediate-term studies demonstrated significant efficacy of opioids over placebo,” reviewers found. “Analgesic efficacy of opioids in chronic neuropathic pain is subject to considerable uncertainty.  Reported adverse events of opioids were common but not life-threatening.”

For specific opioids, results vary. Cochrane found limited, low-quality evidence for oxycodone for neuropathy. Findings for tramadol were discouraging for neuropathic pain and osteoarthritis.

But extended release tapentadol (Nucynta) provided better pain relief for musculoskeletal pain than oxycodone and placebo, although “the clinical significance of the results is uncertain.”

Cochrane on NSAIDs

The findings for NSAIDs are similarly mixed and the type of pain matters a lot.

For chronic low back pain, Cochrane found that in about half of clinical trials NSAIDs were more effective than placebo for reducing pain and disability, but “the magnitude of the effects is small, and the level of evidence was low.”

For neuropathic pain in adults, a Cochrane review found “no good evidence to tell us whether or not oral NSAIDs are helpful to treat neuropathic pain conditions.”

For kidney stone pain, Cochrane found that “NSAIDs were more effective than other non‐opioid pain killers including antispasmodics for pain reduction.”

For fibromyalgia, the evidence for NSAIDs is weak, with reviewers concluding that “NSAIDs cannot be regarded as useful for treating fibromyalgia.”

And for chronic non-cancer pain in children and adolescents, Cochrane reports that “we have no evidence to support or refute the use of NSAIDs.”

Of course, what works for an individual cannot necessarily be predicted from a Cochrane review. Clinical decision-making involves a risk/benefit assessment, with consideration for each patient’s specific circumstances and close follow-up to monitor outcomes. Safety is paramount as well, in particular for drugs like opioids that have significant risks.

In sum, it is difficult to make a blanket statement about opioids versus NSAIDs for chronic non-cancer pain. Results vary by specific opioids and type of pain. We need better studies to inform clinical practice and improve patient outcomes.

Roger Chriss lives with Ehlers Danlos syndrome and is a proud member of the Ehlers-Danlos Society. Roger is a technical consultant in Washington state, where he specializes in mathematics and research. 

Inflammation Cascades Cause Intractable Pain Syndrome

By Forest Tennant, PNN Columnist

The greatest research breakthrough in recent years that will provide much hope for persons with intractable pain syndrome (IPS) has been the discovery of the “inflammatory cascades” inside the central nervous system (CNS). Now that this is known, there are specific measures to take to reduce or halt this process.

Most persons with IPS have two inflammatory cascades, one in the brain and the other in the lower spinal canal. They are called cascades because one area of inflammation can ignite another in a continuous chain reaction and spread.

Excess electric currents enter the brain from a bodily site of damage or diseases. In response to tissue injury, inflammation initially begins around receptors and spreads to other parts of the brain, just like the inflammation that causes cellulitis on the skin.

Inflammation in the lower spinal canal usually starts in a protruding intervertebral disc or due to a puncture, infection or injury to the dura-arachnoid covering of the spinal canal.

Once inflammation starts in either the brain or inside the spinal canal, it may not ever cease or burn-out. It may even silently continue to spread and damage CNS tissue with progressive pain and disability.

How to Control Inflammation

While pain relief is always the first thing on the mind of an afflicted person, measures to control and suppress the inflammatory cascade are essential. Normal anti-inflammatory agents don’t usually enter the brain or spinal canal in adequate amounts to be very helpful. You must use multiple agents that cross the blood brain barrier.

Every person with IPS must be on a daily program that include three measures to control the cascades of CNS inflammation or your condition will likely deteriorate. This can be done through diet, vitamins and supplements that help prevent inflammation; medications that reduce inflammation; and movements that help keep spinal fluid flowing.

Review the three measures listed here with your family and medical practitioners. Select the nutrients, medications and exercises to develop a program that best fits you.

You must continue daily cascade control for as long as you have pain. Opioids and other analgesics, by themselves, do not control the inflammatory cascades. Without a cascade control program, you can expect that your pain relievers will diminish in effectiveness and may totally stop working.

Forest Tennant is retired from clinical practice but continues his research on intractable pain and arachnoiditis. This column is adapted from newsletters recently issued by the IPS Research and Education Project of the Tennant Foundation. Readers interested in subscribing to the newsletter can sign up by clicking here.

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

Ideology Is Guiding Pain Care, Not Science

By Roger Chriss, PNN Columnist

An overarching question in pain management and the opioid crisis is whether or not prescription opioids have any value in treating chronic non-cancer pain. 

Some say that the answer is a resounding “No.” Studies to date on the effectiveness of opioids are often too small, methodologically weak or too short-term to be convincing. But these same studies are often used to claim lack of efficacy, and for the same reasons they cannot do that.

At present, we don’t know if or how well opioids work for chronic pain. To establish efficacy, we’d need major studies or clinical trials that run for years, using many hundreds or even thousands of patients. Opioids would need to be compared to placebo or other treatments for various forms of chronic non-cancer pain, from inflammatory and autoimmune conditions to neuropathies and genetic disorders.

Such studies have not been done. A U.S. government website that tracks clinical studies lists 685 trials for “opioids and chronic pain,” with several terminated or withdrawn, others just now recruiting, and only a handful completed. Many of these studies look at substance use disorders, tapering or de-prescribing, or are small-scale efforts at comparing two opioids.

There are no large-scale studies of opioids for chronic non-cancer pain getting started or underway at present.

There are over 14,500 studies on “opioids and chronic pain” listed in PubMed, a database maintained by the National Institutes of Health. One of the few that looked at long-term use of opioids is the 2018 SPACE study, which found that opioids were not superior to non-opioid medications over 12 months.

But the SPACE study has important limitations: It only looked at patients with chronic back pain or osteoarthritis of the hip and knee. Researchers also put the opioid tramadol in the non-opioid group and let some patients switch from the non-opioid to the opioid arm in order to achieve good analgesia.

Another study found that only one in five patients benefited from long-term opioid therapy, with young and middle-aged women showing the least improvement in pain and function. But this was a telephone survey that relied on a pain scale to assess outcomes, with no mention of diagnoses and no randomization or placebo control.

Similar studies with more positive outcomes can be found. According to a Cochrane review, the opioid tapentadol (Nucynta) worked better than oxycodone and a placebo in treating chronic musculoskeletal pain. But the clinical significance of this finding is uncertain.

In other words, we don’t have the kinds of studies we need to figure out if opioids work for chronic pain. This means that when people claim there is no good evidence for opioids in long-term pain management, they have a point. But for the same reason, there is no good evidence against opioid efficacy, either.

Of course, there is good evidence about opioid risks. As PNN reported, an Australian study found that people on long-term opioids do sometimes engage in risky behavior such as filling a prescription early. But this study didn’t find major risks of dose escalation, diversion or overdose that are often claimed to be common.

The solution would be to do major trials. But there seems to be little incentive to do this. The opioid crisis and associated ideological debate about drug legalization have combined with lawsuits and public health policy to remove any motivation to find out more about efficacy. The results of such a study could sway outcomes in the ongoing opioid litigation or ignite new lawsuits, or could even cripple advocacy groups on either side of the opioid divide.

There are, arguably, subtle incentives not to pursue high-quality clinical trials on opioids for long-term pain management. Instead, we’re seeing lots of meta-analyses, reviews, and retrospective studies, none of which is particularly convincing because summarizing old studies with known weaknesses generally cannot answer big questions.

For the foreseeable future, we may be stuck with ideology instead of science guiding clinical pain care.

Roger Chriss lives with Ehlers Danlos syndrome and is a proud member of the Ehlers-Danlos Society. Roger is a technical consultant in Washington state, where he specializes in mathematics and research. 

Rare Disease Spotlight: Cauda Equina Syndrome

By Barby Ingle, PNN Columnist   

The rare disease spotlight this month shines on cauda equina syndrome (CES), a serious neurological disorder that affects a bundle of nerves at the end of the spinal cord called the cauda equina. The condition is relatively rare and affects about 1 in 70,000 people.

Cauda equina syndrome (CES) was first described in the medical literature by Drs. William Mixter and Joseph Barr in 1934, although the earliest documented case happened to a man in the late 1800’s whose cauda equina was damaged during a surgical procedure that left him incontinent.

Nerves in the cauda equina give both motor and sensory function to the legs, bladder, anus and perineum. When damaged, CES can develop quickly or gradually, causing low back pain, numbness or weakness in the lower extremities, pain that radiates down the leg, and loss of bowel or bladder control.

In an acute onset, sensory and motor deficits in the lower body typically develop within 24 hours. Gradual onset can develop progressively and symptoms may come and go over the course of several weeks or months.

A sudden onset of sexual impotence, bladder dysfunction or sensory loss in the saddle region of your legs and buttocks can also be a sign of CES. Imagine sitting on a saddled horse and not being able to feel anything in the body areas that sit on a saddle. This would be a telling sign.  

There are multiple causes of CES, including trauma, herniated discs, spinal stenosis, tumors, infections and inflammatory conditions such as Paget’s disease or ankylosing spondylitis. Medical errors like poorly positioned screws in the spine and spinal taps can trigger CES as well.

When there is an acute onset of CES, it usually requires an emergency surgical procedure. You need fast treatment to prevent lasting damage that causes incontinence or paralysis of the legs.

To diagnose CES, a patient will need an MRI (magnetic resonance imaging). This is the best method of imaging the spinal cord, nerve roots, intervertebral discs, ligaments and soft tissues affected by CES. If you are diagnosed with CES, you should see a neurosurgeon or spinal orthopedic specialist to assess the need for an urgent spinal decompression and other options.  

Short of surgery, what can providers do to help reduce the symptoms of CES? This depends on what caused it to develop. One of the first options is the use of high dose corticosteroids, which can reduce swelling in the spine. If there is a mass or tumor involved, radiation or chemotherapy may be needed after surgery. If the cause is an infection, you will need antibiotics within 2 days of the onset of symptoms

Receiving proper and timely care is critical for CES and can assist in the recovery of bladder and bowel function. This may take years to fully reverse.  

If you have CES or know someone with it, you can find support groups on Facebook here, here and here. The Cauda Equina Foundation and the Cauda Equina Champions Charity are also good resources for CES patients seeking advice and information.

Barby Ingle lives with reflex sympathetic dystrophy (RSD), migralepsy and endometriosis. Barby is a chronic pain educator, patient advocate, and president of the International Pain Foundation. She is also a motivational speaker and best-selling author on pain topics. More information about Barby can be found at her website.

Do You Have Central Sensitization or Intractable Pain?

By Forest Tennant, PNN Columnist

Chronic pain patients may now be told by their doctor, nurse practitioner or pharmacist that they have “central sensitization” (CS). This vague, non-descriptive term is unfortunate in many ways. Nevertheless, it appears to be here to stay. 

Since Intractable Pain Syndrome (IPS) is a far more serious condition that requires an aggressive, multi-component treatment approach, it is essential to know the difference between IPS and CS. 

Going forward, we believe that it will be increasingly difficult to obtain some medications unless you have IPS. Therefore, it is of vital importance to not only know if you have IPS, but you must be able to clearly explain it to your physicians, family and insurance carrier. If you have simple chronic pain or CS, you could be quite limited in obtaining many prescription medications. 

Definition of Central Sensitization: Amplification or heightened pain above what would normally be expected from tissue damage or injury. 

CS occurs when brain tissue starts to alter due to excess electric currents that originate in damaged or injured tissue. Brain tissue alteration is referred to as neuroplasticity. CS can often be recognized if pain advances, because it begins to cause insomnia and requires daily, rather than “as-needed” medication. 

CS is the forerunner or precursor of IPS. Almost all persons with IPS have had or currently have CS. There is a movement among medical practitioners to recognize CS and treat it with drugs like duloxetine (Cymbalta) or pregabalin (Lyrica) to prevent it from advancing to IPS. 

Definition of Intractable Pain Syndrome: Constant, incurable pain with cardiovascular, endocrine and autoimmune complications.

Only some medical conditions cause IPS. The most common are arachnoiditis, Ehlers-Danlos syndrome, brain injury and Reflex Sympathetic Dystrophy (RSD or CRPS). 

Levels of estradiol and testosterone often go down with IPS, causing symptoms which include amenorrhea in women (missed menstrual periods), impotence in men, fatigue, loss of sex drive, osteoporosis and loss of teeth.

Your autoimmune system will also be affected by IPS, causing elevation of inflammatory markers, cytokines, proteins, and white blood cells.

This could result in symptoms of fibromyalgia, thyroiditis, carpel tunnel syndrome, TMJ, mast cell activation, and migratory joint pains.  

Pain from IPS will cause elevations of pulse and blood pressure. Cortisone and insulin levels will also go up, causing elevations in glucose and cholesterol.

“Going forward, we believe that it will be increasingly difficult to obtain some medications unless you have IPS... If you have simple chronic pain or CS, you could be quite limited in obtaining many prescription medications.”

— Forest Tennant

It is up to the pain patient with IPS to educate all concerned parties that their CS has turned into IPS and that it is a serious syndrome with cardiovascular, endocrine, and auto-immune complications. 

Each person with constant pain needs to catalogue the above manifestations and make a record to give to your medical practitioners and pharmacist. If you haven’t had blood tests for hormone and autoimmune dysfunction, you must request these be done. Please review our website and obtain materials on IPS for your medical practitioners and pharmacist. 

Forest Tennant is retired from clinical practice but continues his research on intractable pain and arachnoiditis. This column is adapted from newsletters recently issued by the IPS Research and Education Project of the Tennant Foundation. Readers interested in subscribing to the newsletter can sign up by clicking here.

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

How To Get Medical Help for Intractable Pain

By Forest Tennant, PNN Columnist

Americans have been trained and oriented to believe that when making an appointment with a medical provider they will walk in, discuss their health issues and receive good care. Those days are long gone if you need care for a painful disease like Intractable Pain Syndrome (IPS).

It is common for persons with IPS to forget how rare this condition is compared to more prevalent diseases such as asthma, diabetes and hypertension. Any person with IPS also has to face the sad fact that the media, government and mental health professionals have condemned and painted every person with IPS as a drug abuser who is not worthy of being trusted with an opioid, benzodiazepine or adrenaline type stimulant.

Things have gotten so out-of-hand that most doctors are afraid to treat pain for fear of government penalties or condemnation by their peers, hospital or malpractice insurance carrier. Many veterans’ hospitals and private health plans now essentially ban the prescribing of opioids.

State and federal policies also make it difficult to travel long distance to access treatment, as that may be seen as a “red flag” that a patient is doctor shopping or visiting a pill mill.

Whenever possible, persons who have IPS should pursue physicians and nurse practitioners in their local community to provide necessary care.

Here are some tips we recommend when visiting a local medical provider for the first time:

1. Do not refer to yourself as a “pain patient,” but as a person with a disease that causes pain. Tell providers what condition you have been diagnosed with: “I have adhesive arachnoiditis, neuropathy, Ehlers-Danlos Syndrome, etc.” 

2. Put together a complete set of documented medical records and bring them to every appointment, including personal identification, local address, insurance coverage, medical diagnosis, MRI’s, lab tests, and list of past treatments. Your records should be neatly organized in a 3-ring binder or file folder.

3. Know your state’s opioid prescribing guidelines and regulations. Do not ask physicians or pharmacists to violate these rules. 

4. Research and understand your disease and carry written materials about it to your medical providers.

5. Identify a local pharmacy and health food store in your community that will fill your prescriptions and carry the supplements you need. Don’t ask a doctor to find you a pharmacy.

6. Know and be able to describe the complications of your constant pain, such as hypertension, tachycardia, elevated cholesterol, diabetes, autoimmunity and hormone deficiencies.

7. Until regular care is established with a provider, a family member -- ideally a spouse -- should attend all appointments to help build credibility and assurance with the provider.

8. Know the name and dosage of every drug and supplement you take, and which ones treat the cause of your pain, suppress the pain, or treat a complication of your pain.

9. Plan on having multiple medical practitioners to treat your conditions. For example, your primary care physician may treat your hypertension or hormone deficiencies, but a neurologist may treat the pain.

10. Due to opioid restrictions, identify non-opioid substances that will substitute or potentiate whatever opioid may be available in your community. Some examples: kratom, CBD, palmitoylethanolamide (PEA), ketamine, oxytocin.

11. Develop a care plan of non-prescription agents to treat the cause of your pain, suppress inflammation and boost hormone levels. 

Know Your Diagnosis

You must have a verifiable, anatomic diagnosis that is the cause of your IPS. The fact that you have intractable pain is not sufficient. You must know the cause of it.

An anatomic diagnosis requires a physical examination plus confirmation with an x-ray, MRI, photograph, blood test, elector-conduction study or biopsy. This information must be documented in your medical record. Equally important is to keep a copy of all test results in your personal possession -- not in some doctor’s office.

Two cases offer examples of mistakes patients can make when when visiting a provider for the first time:

1) A woman consulted with us who was taking three different opioids that had quit providing pain relief. When asked what caused her pain, neither she nor her husband knew. They could not provide an answer.

2) A woman on two opioids and three ancillary agents wanted a letter to support her disability claim. When asked the cause of her pain, she didn’t know, except that her feet and legs hurt, and someone told her she might have fibromyalgia.

Neither of these patients could produce a single page of medical records stating the cause of their pain. Not surprisingly, they also couldn’t locate a doctor to help.

The following are not considered specific enough diagnoses to obtain opioids or disability: bad back, sciatica, failed back, sprain or strain, fibromyalgia, headache, accident, EDS, neck pain or pain from a fall. 

Persons who have IPS or chronic pain are usually taking several drugs, including controlled medications, but don’t always know why they are taking them. If you don’t know why you are taking a drug, you may appear to medical practitioners to simply be a drug seeker who abuses medication or has an addiction or opioid use disorder.  

If you can’t explain in detail why you take each medication, including supplements, you shouldn’t be taking them. No MD or nurse practitioner will prescribe them to you if you don’t know why you are taking them. That is why it is imperative that you learn as much as you can about each medication and supplement you are taking. 

If the only care you are seeking is for temporary, symptomatic pain relief with opioids or benzodiazepines, don’t expect to find pain care. Also, don’t expect acceptance from local practitioners unless you are taking medications to treat the cause of your pain and to permanently reduce your pain. 

Forest Tennant is retired from clinical practice but continues his research on intractable pain and arachnoiditis. This column is adapted from newsletters recently issued by the IPS Research and Education Project of the Tennant Foundation. Readers interested in subscribing to the newsletter can sign up by clicking here.

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

Why President Biden Must Act on Stem Cells

By A. Rahman Ford, PNN Columnist

In a recent Forbes article, Jake Becraft argues that biomedical manufacturing must receive similar federal investment as technology infrastructure if all Americans are to have equitable access to emerging medical technologies like stem cell therapy.

Becraft notes that -- unlike the rollout of 5G wireless technology, which received substantial public and private investment -- healthcare distribution bottlenecks have received much less attention.

 “If 70% of Americans should have access to 5G, why shouldn’t they also have access to live-saving therapeutics?” asks Becraft, who is the founder and CEO of Strand Therapeutics. “What good is gene therapy to cure blindness if only those with an extra $850,000 in their pocket and home near an urban center can access it?

“If we invest in the fair and equitable distribution of life-saving therapeutics across the country, and not just in the medical hubs of major cities, we could make cell and gene therapies as accessible as we have aimed to make 5G. Cures shouldn’t exist only for the privileged.”

For Becraft, true next-generation health access requires a revolutionizing and re-imagining of healthcare manufacturing and delivery, which would consequently speed the development of cell therapies.

A Broken Stem Cell Infrastructure

Becraft’s argument cuts to the heart of the stem cell accessibility divide, which is especially true with regard to autologous stem cells that are derived from a patient’s own body fat, bone marrow and other tissues.

Harvesting, processing and administering autologous stem cells is relatively simple, cheap and can be done in one day.  Clinicians around the world have been using these therapies to treat or even cure autoimmune diseases and orthopedic problems that are often poorly treated with conventional medical modalities,

But autologous stem cells are currently heavily regulated in the U.S. because the Food and Drug Administration considers a person’s own stem cells to be “drugs” and thus subject to the long, arduous and expensive clinical trial process.

Other countries have more relaxed stem cell regulations. This means that professional athletes and wealthy people can simply fly to Europe or Columbia to receive potentially life-saving therapy. Meanwhile, the average American – many of whom are financially devastated by COVID-19 – is left to languish and suffer.

Clearly, the incrementalism and gradualism that has for too long pervaded and permeated medical technological progress must give way to thoughtful, purposeful and conscious revolutionary reconsideration.

A ‘New Deal’ for Stem Cells

Up to this point in his nascent administration, President Biden has not made stem cell accessibility and affordability a priority. Yes, there are several clinical trials underway for stem cell candidates to treat the symptoms of COVID-19. And, to the FDA’s credit, these trials are being expedited.

But thick federal bureaucratic fog still stifles the commercialization of emerging stem cell modalities that Americans in pain so desperately need. The FDA has yet to approve a single stem cell product as a treatment for arthritis or any orthopedic condition.

Almost one year ago, I wrote that then FDA Commissioner Stephen Hahn had the opportunity to implement a stem cell “New Deal” that would provide much-needed clarity to the regulatory landscape by vesting the states with primary authority over autologous stem cells.

The “New Deal” baton has now been passed from the Trump administration to President Biden, who can help lead us the finish line of stem cell accessibility and affordability. His administration has an opportunity to make good on its pledge to do right by the American citizenry it has pledged to serve. President Biden, the American people are counting on you.

A. Rahman Ford, PhD, is a lawyer and research professional. He is a graduate of Rutgers University and the Howard University School of Law, where he served as Editor-in-Chief of the Howard Law Journal. Rahman lives with chronic inflammation in his digestive tract and is unable to eat solid food. He has received stem cell treatment in China. 

The Pain Community Needs More Unity and Awareness

By Carol Levy, PNN Columnist

My column last month, “It’s Time for People in Pain to Be Heard,” received a lot of comments on PNN and in social media.

Most often the writer wrote about why or how they had been hurt by the implementation of the CDC opioid guideline. Several people commented that it’s not because they're too busy to become involved, they’re just in too much pain to advocate for themselves.

One poster told the story of a recent pain rally held at their state capitol. It was a real-life case of what if you threw a rally and no one came? Only one person showed up, defeating the point of the rally. The writer did not mention how many had said they would be there, but I imagine the number had to be more than one.

Yes, the pain stops us from doing many things. Yes, our complaints about how the battle against opioid prescriptions has made us the bad guys, has scarred us, and made our lives so much harder are true. But saying it only on PNN, Twitter, Facebook and other social media sites does not help the cause.

It helps us and only us, by giving us an outlet to express our anger and frustration about how our minds and bodies are affected when our medications have been reduced or stopped. The problem is that by speaking out only among ourselves, the rest of the world hears silence.

When we say the pain is what keeps us from going out and protesting, maybe we need to look at the many walks against cancer, Alzheimer's, multiple sclerosis and other diseases. Many of the people involved in those walks are not the patients themselves, who often cannot participate because of their illness. It is their family, friends and colleagues.

What if we worked to marshal our families, our friends and our colleagues to march for us?

Most people do not understand what chronic pain is or that it comes in many different forms. They are not educated about Complex Regional Pain Syndrome (CRPS), trigeminal neuralgia and other cranial neuropathies, Ehlers Danlos, and many other diseases and disorders that have essentially claimed our lives.

We have many “Awareness” days. For example, the first Monday of November each year is CRPS Awareness Day; October 7 is Trigeminal Neuralgia Awareness Day; and May is Ehlers Danlos Awareness Month. We who have the disorders may be aware of these days, but how many people in the general population don't know the day or month exists, much less what the disorder is?

To many people, “chronic pain” is merely pain that lasts a long time. CRPS or trigeminal neuralgia are chronic, progressive and often incurable, but to those who are not educated about them, they’re more like a stubborn toothache or ankle sprain that won’t go away.

What if on awareness days we inundate Congress, the news media and social media with letters, emails and tweets? What if we acted as a true group, not individual voices in the wilderness, but as a harrowing cry? Maybe then our voices would finally be heard.

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.

The Unintended Consequences of the CDC Opioid Guideline

By Dr. Lynn Webster, PNN Columnist

Jack Schwartz (a pseudonym) is a child of Holocaust survivors. As a small boy, he was traumatized by observing his older brother become addicted to heroin. He also developed a substance use disorder of his own that he believes was due, in part, to childhood PTSD.

A 64-year-old psychotherapist, Schwartz has been in chronic pain since a 1996 car accident injured his neck. Although he has a history of substance use disorder, he has used opioids to manage his pain for the past several years.

His personal physician, who retired at the end of 2020, wrote a letter stating Schwartz has been prescribed Norco (a combination of acetaminophen and hydrocodone), has been compliant, and has shown no signs of abuse for the previous four years. The retiring doctor hoped Schwartz would be able to find someone to continue prescribing his Norco.

Schwartz has not yet found a new physician. In the meantime, his insurance company notified him that they would not pay for his medication, citing the CDC’s opioid prescribing guideline and their own opioid policy, which states that "narcotics are not the treatment of choice for chronic nonmalignant pain."

Schwartz contacted me after reading a PNN column I wrote, "Ironic Partners: Suicide Prevention and Pain Awareness Month." He said he was suicidal and asked me for advice. We agreed that sharing his story might help others in similar positions.

Who Should Write Clinical Guidelines?

Regrettably, Schwartz’s situation is not uncommon. Many insurers and regulators have adopted rigid policies that cite the CDC’s voluntary guideline as if it was the standard of care. The CDC has admitted its guideline is being misapplied and is working on an update, but so far the agency has done little to correct the problem.

In fact, the CDC has gone even further than the guideline, producing a fact sheet for physicians, “Nonopioid Treatments for Chronic Pain,” in which it recommends alternative medications for common chronic pain conditions including migraine, low back pain, osteoarthritis, fibromyalgia, and neuropathic pain.

Why is the CDC making medical treatment recommendations?

Cardiologists and heart surgeons should develop recommendations for managing heart disease. Endocrinologists should offer recommendations for managing diabetes. Infectious disease specialists should make recommendations for managing infections. Addiction specialists should provide recommendations for treating addiction. And it is pain specialists who should develop treatment guidelines for treating pain.

The way it should work is this: Professional organizations representing medical specialties develop treatment guidelines. Whenever possible, input should be solicited from patient stakeholders. The role of government organizations such as the National Institutes of Health, FDA, CDC, and DEA should be to provide data and resources to these groups, so they can initiate and revise treatment guidelines as the science evolves.

Specialists should lead the way to ensure patient care is clinically driven and patient-centered. Non-clinicians, such as government officials — even if they have medical degrees— should not be making treatment decisions or creating guidelines for specialists and their patients.

Walking Back the CDC Guideline

In my view, it was a mistake for the CDC to release the guideline in 2016. Before it was published, I predicted people in pain would suffer and that the guideline would not reduce the number of opioid-related overdose deaths. Unfortunately, I was correct.

Many providers, patients and their loved ones have urged the CDC to revise or withdraw the guideline. The American Medical Association has urged the CDC to make "significant revisions."  

The three co-authors of the guideline, Deborah Dowell, MD, Tamara Haegerich, PhD, and Roger Chou, MD, even wrote a commentary for The New England Journal of Medicine in 2019 acknowledging that their recommendations were being misapplied and were “likely to result in harm to patients.”

The admission that the CDC guideline was harmful was long overdue. Now the question of how the recommendations should be changed must be addressed. Hopefully, the CDC will consider input from people who have been harmed the most by the guideline and will revise their recommendations accordingly.

Jack Schwartz continues to struggle with intractable pain and suicidal feelings. He, and millions of people like him, need for your opinion and your provider’s perspective, to be heard. Maybe then more rational decisions will be made regarding the use of opioids for the treatment of pain.

Lynn R. Webster, MD, is a vice president of scientific affairs for PRA Health Sciences and consults with the pharmaceutical industry. Lynn is author of the award-winning book The Painful Truth, and co-producer of the documentary It Hurts Until You Die. Opinions expressed here are those of the author alone and do not reflect the views or policy of PRA Health Sciences. You can find him on Twitter: @LynnRWebsterMD.

My Cancer Is Back: Facing Surgery With CRPS

By Cynthia Toussaint, PNN Columnist

After hearing the worst words of my life, “Your cancer has grown back,” I felt hopeless and hated the world. Worse, I had to tell my longtime partner and caregiver, John, the grim news. How could we pull up our frayed boot straps again and survive yet another impossible health crisis?

Since getting Complex Regional Pain Syndrome (CRPS) four decades ago, people often use words like “fighter,” “pain warrior” and “super human” to describe me. The most recent catch phrase is, “Cynth, you got this!”

I’ve come to detest this perceived awesomeness. I don’t want to be an uber-person. I never did. I’m tired. I’m so, so tired. And I long for a slice of vanilla-flavored normal.

As the owner of CRPS and 19 comorbidities, I could not afford the diagnosis of triple negative breast cancer, the most aggressive form. But that’s what was delivered, since luck has never been this lady’s lot.

Without consulting me, the universe long ago decided that I’m supposed to slay every dragon while surviving never ending illness and trauma. This latest hell-news has filled me with anger, rage and major depression.

So much so, that for the first time ever, I’m isolating. This social butterfly has returned to her cocoon, unable to feel joy.

I can’t sleep as I’m plagued by night terrors. Each afternoon, my body trembles uncontrollably. Once heavenly activities, like meditation, exercising and eating, are now chores.

John massages my taut muscle tension through the days and nights – and my IBS has gone haywire. My bubbly spirit is absent and what’s left is demoralized.

And not so long ago, I thought I had this thing licked.

Early last year, after six months of weighing my impossible-with-CRPS treatment options, I started aggressive chemotherapy knowing that this regimen could leave me with a life not worth living. The dream was that my pain would stay in check and I’d achieve a Clinical Complete Response (cancer that cannot be seen with imaging). I’m certain chemotherapy almost ended me, as I was left with virtually no immune system. As a bonus, this was during COVID. 

I was coined a “super responder” when I miraculously accomplished a complete response. At that point, the odds were strongly in my favor that the cancer was gone. But the only way to be sure was to do the follow-up standard of care surgery, which I chose to forego because, with CRPS, surgery is, well, not an option.

The doctors were floored by how well I did, and every indicator leaned toward a clean pathology report. I was ready to move on with my life, one that I felt I’d earned by doing everything right (diet, exercise, stress management, good sleep – the whole kit and caboodle!) One doctor commented, “Don’t even look at the survival numbers. They don’t apply to you anymore.”   

True to form, things went as far south as possible. Because I’m one of the unlucky ones who’s cancer stem cells never went away, my malignancy is growing back. This is not a “recurrence,” but a “persistence” because the chemo didn’t hold.

And now that my complete response is gone, I’ll never have my prior odds. John has lamented for years, “You NEVER get a break!” and I’m finally seeing it his way.

For a chance of survival, I must now have – ta daaa!! – surgery. The doctors tell me my best shot is to do a lumpectomy with follow-up radiation or a stand-alone mastectomy.

Tragically, radiation is off the table as it often causes neuropathic pain. In fact, a radiologist who I respect told me flat out, “I can’t ethically do it to you.” And during a recent visit with my surgeon, she strongly advised that, due to CRPS, I’m not a candidate for a mastectomy, let alone reconstructive surgery. Wow.

Finding a New Care Team

Adding insult to injury, out of nowhere, my lead oncologist dropped me! She did so due to questionable guidance (something I can’t detail here) and is fearful of litigation, which doesn’t make it hurt less. This woman had become my hero and I trusted her with my heart and life. Her betrayal has been soul-crushing and created a crisis of faith. I don’t know who or what to believe in anymore.

But through the shadows, I’m quietly planning my next move – and will take on Round Two one slow... step… at… a... time. I’m assembling a new-and-improved care team to up my odds, including an oncologist, acupuncturist, physical therapist, pain specialist and psychologist. I’ve sweetened the pot with an EMDR (an effective technique for trauma release) practitioner who specializes in people with CRPS. Heck, I’ve even lined up the use of a heated pool in these COVID shutdown days.    

I’m going to have a lumpectomy, a word I can still barely say, let alone write. The scariest part is that my surgeon will also remove a possibly involved lymph node in a nerve rich area, ripe for ample, new pain. My new oncologist is concerned that due to a surgery-induced CRPS flare, my arm may freeze up and become a non-functional torture machine.

Even if the surgery mercifully works without condemning me back to bed, this wouldn’t flip me a “get-out-of-jail-free” card. Because I can only do the “minor” surgery without radiation, my odds of a quick recurrence remain high. This means I’ll be on the prowl for some off-the-grid insurance, perhaps low-dose chemo or an immunotherapy clinical trial. But neither can measure up to the standard of care radiation.

God, to be well enough to be sick!         

So, here I am again, looking down the barrel of a gun, knowing it likely has a bullet with my name on it. Like I said, I’m tired and angry. I’m up to my ass with picking the lesser of two evils, and having to crack the code of the near impossible.

Give me a break, already! And I don’t mean this in a small way. I’m shouting out to the big, bad, ice cold universe that I hope, somewhere, somehow, has a heart.

Cynthia Toussaint is the founder and spokesperson at For Grace, a non-profit dedicated to bettering the lives of women in pain. She has lived with Complex Regional Pain Syndrome (CRPS) and 19 co-morbidities for nearly four decades, and became a cancer survivor in 2020. Cynthia is the author of “Battle for Grace: A Memoir of Pain, Redemption and Impossible Love.” 

How You Can Change the Public Conversation About Pain

By Richard Lawhern, PhD, PNN Contributor

Because I am highly visible as a healthcare writer and advocate for people in pain, I receive many inquiries from people who have been deserted by their doctors and denied effective treatment.  Many ask me, “What can I do?” 

My answer is that many of our problems with pain treatment began with the guideline on opioid prescribing for chronic non-cancer pain, published in 2016 by the U.S. Centers for Disease Control and Prevention. The CDC is currently updating its recommendations, with the goal of releasing a revised guideline for public comment late this year. Without major change or outright repeal of the guideline, nothing will change and much may grow worse.

CDC management knows that they messed up -- they’ve been told so repeatedly over the last five years by both doctors and patients.  But still they dither and delay, and refuse to act on behalf of millions they have harmed.

Congress has added insult to injury with misdirected legislation blaming doctors for the substance abuse of people who never saw a doctor for pain.  And the Drug Enforcement Administration continues to drive doctors out of pain practice by targeting and persecuting those who prescribe opioid medication for people in agony.   

We can no longer depend on the CDC and DEA to do the right thing. They are too concerned with defending their earlier and ongoing misbehavior.  Instead, we’re going to have to change a lot of minds in Congress, the Executive Branch, and at the state level to force change by legislation. Thousands of patients, caregivers and doctors must lobby if change is to happen.  

How Do We Lobby Effectively? 

We don’t have the money to hire lobbyists. Law firms won’t sue without millions of dollars in retainers up front.  Most legislators don’t actually read emails, even from their own constituents, and increasingly they lock out emails from anyone who doesn’t vote in their districts. Petitions don’t work either, even when we have 100,000 signatures behind them.   

So what can we do? We can phone our legislators to demand change, and we can reach out to editors, publishers, radio and TV news anchors to ask that they show the public “the other side” of the opioid crisis.

It may seem that one person acting alone can’t do much.  But thousands of people acting consistently sometimes can.  We need patients, caregivers and medical professionals to contact their legislators and regulators.  Not just once, but every week.  Your congressional representatives in the U.S. House and Senate, as well as state legislators, can all be candidates for a phone call.  

To learn their names, first do a Google search for “legislators” plus your zip code. You might need to explore several “hits” to find the phone numbers for local congressional offices and the offices of your state legislators. Other possible contacts to explore:  

• U.S. National Office of Drug Control Policy 

• Office of the Governor  

• State Health Department

• Executive Director of your State Medical Board 

• State office of the Drug Enforcement Administration 

• State Attorney General 

Two important websites may reduce the burden of multiple Google searches to locate these people. The Chronic Illness Advocacy & Awareness Group (CIAAG) has links to a national directory of legislators and regulators by state; a library of resources and research; “How to” advocacy guides; and templates for calling and meeting with legislators. Similar resources can be found at Pain Warriors Unite, which also has a large archive of related information and advocacy guides.  

What Should We Tell Them?

When you locate the phone numbers of legislators and regulators, the next task is to phone their offices and talk to them or their staff. 

When you call, you might find that the office isn’t answering their phones.  If you can leave a message, then state your name and callback number. Tell them you are a voter in their state or district, and you want to talk with their healthcare policy staffer about how bad policy and restrictions on pain treatment are destroying your life. Hang up politely.

If you reach anyone in real time, it will almost always be a staffer.  As you speak, try to listen for their responses and be respectful.  Here is a possible script.  Practice it aloud before you make your calls, so you are comfortable with what you want to say: 

“Good morning” (or Good afternoon). My name is ___________ and I vote in ______ (State or District number).

“May I ask your name, please?”   [Make a note for later follow-up]

“I’ve been a chronic pain patient for __ years and under doctor’s care for several complex pain issues.  Right now, my life is a wreck because doctors have been terrorized by government authorities. Nearly half of primary care clinics in the U.S. are refusing to accept new patients on opioid pain relievers, even though pain is the number one reason why people see a doctor.  Many practices that still treat pain are rapidly force-tapering patients off opioids, or below effective treatment levels.”

You should include some personal details about what your life is like without adequate pain management. An example might be:

“I literally cannot get out of bed many days, because I am in agony from under-treatment of my pain. I can’t work, do simple chores, or leave the house for basic necessities without help. 

The so-called ‘prescription opioid crisis’ is bogus.  Doctors prescribing opioids for their patients didn’t create our public health crisis with addiction and overdose deaths. Pain patients almost never become addicted. For millions of us, opioids are the only thing that gives us any quality of life.”

End with a call for action. Ask them to do something with the information you give them.

“People like me need your boss to sponsor legislation to fix this mess.  We need him (her) to help stop the widespread persecution of doctors who prescribe medical opioids for people like me.

Restrictions on access to effective pain care are driving thousands of us to buy street drugs for relief or to even consider suicide. If your boss doesn’t act to stop this disaster, then he (she) will become an accessory to it.”

End the call by asking the staffer to add notes from the call to their office phone logs, and to brief the office Chief of Staff or legislator. Ask for a call-back from that individual, confirming that they got the message and are working on your behalf. Be sure to leave a call-back number if they don’t ask for one.

Richard “Red” Lawhern, PhD, has for over 20 years volunteered as a patient advocate in online pain communities and a subject matter expert on public policy for medical opioids. Dr. Lawhern has written or co-authored over 100 papers and articles published in medical journals and mass media.

Rare Disease Spotlight: X-Linked Hypophosphatemia

By Barby Ingle, PNN Columnist  

Coming off a successful Rare Disease Awareness worldwide campaign in February, I decided to go with X-Linked Hypophosphatemia (XLH) for my rare disease spotlight this month.

I do know a little about this disease, having a friend from childhood that lived with a form of it. Back then, it was known as rickets, a softening and weakening of the bones in children. I also served on a patient advisory board a few years ago for a company that created the only FDA-approved treatment for XLH.

Rickets is caused by Vitamin D deficiency, while XLH is caused by a genetic mutation that causes the body to lose phosphorous, an important ingredient for bone health. XLH cannot be cured, but its progression can be slowed with phosphate, Vitamin D and calcium supplementation.

Like rickets, XLH can cause bone deformities. Being bow-legged is the most recognizable symptom, giving providers a visible clue as to which rare disease to test for when they are uncertain. About 1 in 20,000 people carry the genetic mutation that causes XLH.   

The symptoms for XLH vary for each patient, just as they do for other conditions. The most common ones include osteoarthritis, poor bone health, bone pain, low bone density, bones that easily fracture, short stature, bow-leggedness, major tooth abscesses, large dental pulp, tinnitus, waddling gait, muscle pain and body weakness.

As I mentioned, there is only one approved medication for this disease. The drug Crysvita (burosumab) helps normalize phosphate levels and is indicated for the treatment of XLH in adults and children 6 months of age and older.

The severe bow-leggedness caused by XLH can be treated with surgery to correct and reshape the legs. For less severe cases, phosphate supplements and growth hormones can help strengthen bones. Corrective dental treatments can also help with tooth abscesses and dental pulp issues.

If you’d like to learn more about XLH, there are a few sites that I have found helpful. These include the XLH Network, a nonprofit support group, and the National Institutes of Health’s Rare Diseases Information Center. You can also get information about XLH by visiting the website for Ultragenyx, the company that makes Crysvita.

I really like this video of a family affected by XLH. The children do a great job sharing their story.

When I was growing up, we did not have as much knowledge or awareness about rare diseases as we do now. We expected people with rare conditions back then to get by with little to no assistance. Today we know more and have more treatments, but we still have a long way to go.

I know what it meant to my young friend to get support when we knew far less about XLH. She was able to live a full life, attend school, and participated in gymnastics and cheerleading with me. But she suffered more injuries than most kids, was made fun of for her bow legs, and endured daily physical pain.

I dedicate this rare disease spotlight to my friend.

Barby Ingle lives with reflex sympathetic dystrophy (RSD), migralepsy and endometriosis. Barby is a chronic pain educator, patient advocate, and president of the International Pain Foundation. She is also a motivational speaker and best-selling author on pain topics. More information about Barby can be found at her website.

New Advocacy Group Seeks Smarter Solutions to Pain Crisis

By Pat Anson, PNN Editor

If you’re like me, you are puzzled at times by the sheer number of patient advocacy groups working on behalf of pain sufferers. There are dozens and they all have the same goals: improve the quality of pain care and give patients a voice in a society that seems to have turned its back on them.  

Most of these groups are primarily run by one or two people, have little to no funding, no board of directors, no mission statement and no website. What they lack in money and organization, they make up for in passion and personality driven posts on Facebook, Twitter and other social media, sometimes attracting thousands of followers.

But all too often, the online discourse turns into endless bickering between advocates that accomplishes little for the pain community. Tired of the infighting, some advocates stop advocating and drift away.

A new patient advocacy group was launched this week that is trying to change that. The National Pain Advocacy Center (NPAC) is a 501(c)(3) non-profit led by Kate Nicholson, a pain sufferer and civil rights attorney, who emerged as a patient advocate in 2017 with an inspirational TedTalk that explained how opioids helped her walk again after a botched surgery.  

KATE NICHOLSON

Nicholson has been working publicly – and quietly behind the scenes -- ever since, meeting with legislators, healthcare providers, academics, civil rights advocates, and people with pain. NPAC is an outgrowth of the many connections she has made.

“There are people I have worked with over the last few years on select projects. And I think we all felt we had sort of reached our capacity to work as individual actors. We needed to make a change and come together,” Nicholson explained.

“We needed to advocate more broadly for better treatment for pain. Because even though we were able to stop a bad policy here or there, it was a little like whack-a-mole. They just keep coming back. We needed a broader reach.”

NPAC has a large and diverse group of volunteers on its board of directors and advisory councils; including some familiar names in patient advocacy, such as Laura Mills, Leo Beletsky, Stefan Kertesz, Sally Satel, Anne Fuqua, Jennifer Oliva, Chris Freeman and Sean Mackey, to name just a few.

The advisory councils are so inclusive they include several people who have struggled with substance abuse or work in addiction treatment – which might get some push back from others in the pain community. Nicholson says both pain and addiction need to be addressed if NPAC is to be seen as a credible organization.

“Anytime you meet with policy makers, these two issues have become intertwined in the public conversation because of the way the story about opioids has been told,” she told PNN. “I’m not one of those people who think that no one got hurt because of liberal prescribing. There are people who are susceptible to addiction. I see it as two very stigmatized groups who need to band together to some extent because right now the infighting is causing everyone to go down, really.”

NPAC has gotten some grant money from the Open Society Foundation, another association likely to be questioned because it is funded by liberal philanthropist George Soros, a billionaire who is a magnet for right-wing conspiracy theories.

Nicholson has pledged to never to accept funding from pharmaceutical companies or other organizations that may create a conflict of interest – real or imagined -- with NPAC’s mission.

“Our goal is to change minds and shift policies,” says Nicholson, who serves on a panel advising the CDC as it makes revisions to its controversial 2016 opioid guideline. She says the current state of research and understanding of pain is in “the Dark Ages.”

“My own feeling is that pain needs rebranding. If we really think chronic pain is a disease, then shouldn’t we be calling it something different? We don’t call depression ‘chronic sadness’ even though everybody feels sad,” Nicholson said. “I really feel like there needs to be a shift in how we talk about pain and how we understand it. There really needs to be a much bigger conversation than just one treatment modality.”