Living With Chronic Pain in an Opioid Hostile World

By Robert Hale, Guest Columnist

I am 50 years old and suffer from late-stage Ankylosing Spondylitis.  My entire spine has fused, along with my entire neck.  I cannot look left or right, nor up and down.  My shoulders are in the process of fusing.

I have a broken clavicle – broken in two places – that refuses to heal. I also suffer from peripheral neuropathy in my legs, which makes walking feel like treading on broken glass. 

My disease is degenerative, progressive and incurable. The only relief I can get is with opioids.  Taking long acting morphine and hydromorphone as a breakthrough medication, has literally saved my life.  I do not get any joy or “high” from these medications -- only relief from pain -- which is as close to a miracle as could be hoped for, for someone in my situation.

ROBert HALE

For the last 10 years, I have been seeing doctors, both in the field of palliative care and pain management. Early on, we managed to find a dose of opoid medication that was appropriate for me, and I began my life anew.

No longer bed-bound and useless, but able to function again, and become a productive member of my family and society.  I opened up a guitar shop and began working again – albeit at a gentle pace – and I really felt that my life was worth living again. 

I wasn’t happy to be taking pills every day to achieve this feeling of well-being, but it beat the alternative.  I asked my doctor, a wonderful, empathetic and kind doctor, how long I would have to be on these medications.  He told me, “Probably for the rest of your life”. 

Sadly, my awesome doctor left the palliative care clinic I was attending, and I was forced to move to a pain clinic in Overland Park, Kansas.  It is run by a highly respected pain management doctor, who took one look at me, asked me to walk down the hall and back, and knew immediately that I was a good candidate for the medications I had been taking.

For several years more, everything was fine – the doctors and nurses were great. Of course I had to sign a patient contract, agreeing to take my medications as prescribed (which I always do), not to take anything else, including illegal drugs, and not to share my medications with anyone.  I also was subjected to frequent urinalysis to prove that I was complying with my treatment plan. 

I never strayed from that plan, nor did I ever have a drug test showing anything but what it should.  I was, in the words of one of my nurse practitioners, the “perfect patient.”  I took the meds I was prescribed, exactly as they were meant to be used.

I am not an addictive personality, so I never was tempted to use my medications to try to get high, nor do I think I am addicted to my pain medications. I do have a tolerance to them, which is unavoidable in my situation.  I have been on large doses of morphine and hydromorphone for over 10 years. I’ve learned to respect these powerful drugs, and to treat them with great care.

The "New Cruelty"

Unfortunately, ever since the CDC opioid prescribing guidelines were released, stating that the maximum dose for any one person should be no more than 90 mg of morphine equivalent opioids per day, my pain care has changed for the worst.

The guidelines clearly state that they are meant for general practitioners, not doctors who specialize in pain management. However every pain doctor I have contacted see the guidelines as rules, and they have begun a relentless campaign of reduced opioid prescribing.  All of the pain clinics in my area have followed suit.  My pain doctor even went so far as to sell his practice to one of his partners.  I suspect this is so he couldn’t be blamed for the “new cruelty,” as I like to put it. 

It is very disturbing to talk to him these days – it’s like he is a completely different person. Gone is the compassion, the empathetic “do no harm” doctor that I had gotten to know over the last several years.  He now claims that the reason he no longer prescribes the meds we need is because of the danger of overdose.

If a doctor like him can be swayed by this propaganda, there are at least a thousand more around the country acting the same way. 

Some chronic pain patients have it worse than me, although it is difficult for me to imagine that, as my increase in pain levels has literally left me all but crippled.  I have told the pain clinic this, but they just look at me and say, “Oh, I’m sorry.  You’ll get through this somehow.”  But they know better. 

I have already had my medications reduced drastically, to about a tenth of the dose I have been safely taking for years, and I am absolutely miserable.  My days are once again filled with unrelenting pain, and on top of that, I am suffering from opioid withdrawal. I constantly feel like I have the flu, and can only sleep 2 to 4 hours every night.  I am back to being bed-bound most of the time, and it is physical torture to do the simplest things like dressing and showering. 

I cannot help around the house, to help my father who is 77-years old.  He just lost his wife, and my mother, to Alzheimer’s disease, and he needs me.  And I need him.  I can no longer play with my dog, Aya.  This breaks my heart – she deserves so much better.  

The worst part is, I’ll be back in the pain clinic next month, to have my dosage cut down again, because I have not agreed to have an intrathecal morphine pump installed in my body – an option that is not available to me, due to the fusion of my spine.  Other doctors have warned me not to have this procedure done, so it’s back to the clinic to get my meds cut down again.  Pretty soon, I’m going to be at a level of pain that the tiny amount of morphine they will allow won’t even touch.  What am I to do?

Here is a link to an excellent article on PNN, headlined “Pain Care Shouldn’t Be Political Theater” by Dr. Richard Oberg, a man whose disease is in the same family as mine.  

“The current hysteria over opioid pain medication is, without a doubt, the most unbelievable and difficult situation for patients I've ever seen in my 30 years of practice,” Oberg wrote.

Something is going to have to change, and fast, or a large percentage of the chronic pain patients in this country are going to die by their own hands, or be forced to find their medicines through illegal means, or switch to drugs like heroin and become statistics themselves.  I am just one voice, but I speak for thousands. There are so many of us who are unable to even summon the energy needed to type a column such as this. 

I just read an article stating that since the CDC guidelines were put in place, the rate of suicides among pain patients may be rising. I’m not surprised at all.  I think about it all the time now. The only thing keeping me here is the fact that I have people who depend on me, and the fact that I think suicide is a sin. I don’t want to wind up having to learn all these life lessons again. 

Please, for the love of God, listen to my words: Most of us are too weak and too sick to even make a plea, so I’m doing this on behalf of all those who are too weak to even type a letter to their congressmen or the people who can make a difference.  Stop treating chronic pain patients like drug addicts! 

We don’t even like the damned pills, but without them, we are in a living hell – an evil downhill spiral that can only end in madness, addiction to illegal drugs, or death.

Robert Hale lives in Kansas City, MO. He was diagnosed with Ankylosing Spondylitis at the age of 27.

Pain News Network invites other readers to share their stories with us.  Send them to:  editor@PainNewsNetwork.org. 

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

Back Pain Raises Risk of Mental Health Problems

By Pat Anson, Editor

Back pain is the world’s leading cause of disability, but a new international study has documented the toll it also takes on mental health.

British researchers analyzed data for nearly 200,000 people in 43 countries and found that back pain sufferers were three times more likely to be depressed and over twice as likely to experience psychosis.

“Our data shows that both back pain and chronic back pain are associated with an increased likelihood of depression, psychosis, anxiety, stress and sleep disturbances,” said Dr. Brendon Stubbs of Anglia Ruskin University.

“This suggests that back pain has important mental health implications which may make recovery from back pain more challenging. The exact reasons for this are yet to be established.”

Stubbs and his colleagues say their findings, published in the journal General Hospital Psychiatry,  were broadly similar across all 43 countries. The research team studied data from the World Health Survey from 2002 to 2004.

About 80 percent of adults worldwide experience back pain at some point in their lives. A previous study also found that about one in five low back pain patients suffer from depression.

“Further research is required to find out more about the links between these problems, and to ensure effective treatments can be developed. It is also important that healthcare professionals are made aware of this link to refer patients to other services if necessary,” said Stubbs.

Although the association between back pain and mental health problems was similar around the world, the incidence of back pain itself varied widely – from 13.7% in China’s population to 57% in Nepal and 53% in Bangladesh.

A large 2015 study in the United States linked back pain to a wide variety of other health issues, including obesity, nicotine dependence and alcohol abuse.

People with chronic lower back pain are more likely to use illicit drugs -- including marijuana, cocaine, heroin and methamphetamine -- according to a recent study published in the journal Spine.

NBA Coach Tried Marijuana for Back Pain

By Pat Anson, Editor

Steve Kerr may have inadvertently started a national conversation about sports and medical marijuana. They’re certainly talking about it in the NBA.

The 51-year old coach of the Golden State Warriors revealed in an interview Friday that he smoked marijuana to see if it might relieve his chronic back pain. Medical marijuana has been legal in California since 1996.

“I guess maybe I can even get in some trouble for this, but I’ve actually tried it twice during the last year and a half, when I’ve been going through this chronic pain that I’ve been dealing with,” Kerr said on The Warriors Insider Podcast.

STEVE KERR

Kerr missed most of the 2015 regular season after two back surgeries that not only failed to relieve his pain, but resulted in a spinal fluid leak that gave him chronic headaches, nausea and neck pain. Kerr took a leave of absence for four months and started trying various pain relievers, including narcotic painkillers and pot.

“A lot of research, a lot of advice from people, and I have no idea if maybe I would have failed a drug test. I don't even know if I'm subject to a drug test or any laws from the NBA, but I tried it and it didn't help it all. But it was worth it because I'm searching for answers on pain. I've tried painkillers and drugs of other kinds as well, and those have been worse. It's tricky," Kerr said.

It’s even trickier if you’re a professional athlete.

If an NBA player is caught using marijuana – either recreationally or medically – the league requires the player to enroll in and complete a substance abuse treatment program.

A second infraction results in a $25,000 fine. The penalties escalate after that, with a third offense resulting in a 5-game suspension, followed by a 10-game suspension for a 4th infraction.  

The NFL and Major League Baseball have similar marijuana policies, with baseball players facing the ultimate penalty after a 4th infraction: Banning from the league.

Even though Kerr is a coach now – he had a lengthy career as a player – it took some courage for him to speak so openly about marijuana.

“I’m not a pot person. It doesn’t agree with me. I’ve tried it a few times, and it did not agree with me at all. So I’m not the expert on this stuff,” Kerr said. “But I do know this: If you’re an NFL player, in particular, and you’ve got a lot of pain, I don’t think there is any question that pot is better for your body than Vicodin. And yet athletes everywhere are prescribed Vicodin like its Vitamin C, like it’s no big deal.

“I would hope, especially for these NFL guys, who are basically involved in a car wreck every Sunday – and maybe four days later, the following Thursday, which is another insane thing the NFL does – I would hope that league will come to its senses and institute a different sort of program where they can help these guys get healthier rather than getting hooked on these painkillers.”

Some of Kerr’s player welcomed his comments about a controversial issue.

''Steve's open-minded, and obviously with the way the world's going, if there's anything you can do that's medicinal, people are all for it, especially when there's stuff like Crohn's disease out there, glaucoma, a bunch of stuff, cancer,” said Klay Thompson. “But not recreationally, that should not be of its use ever. There's obviously a medicinal side to it that people are finding out, especially people with really high pain.''

“I think it makes a lot of sense what he said,” said Draymond Green, adding that he has never tried marijuana and “doesn’t really know how it feels.”

“From what I hear from football guys, I think a lot of them do it because of all the pain they go through,” Green said. “It makes a lot sense. It comes from the earth. Any vegetable that comes from the earth, they encourage you to eat it. So I guess it does make a little sense, as opposed to giving someone a manufactured pill. The way some of these pills take the pain away, it can’t be all good for you.”

Although the NFL has a reputation for regular drug testing and watching for signs of drug abuse, some former players say about half the league is currently using marijuana for pain relief.  Many grew tired of using painkillers, which one player calls “a scourge in the locker room.”

Steve Kerr says professional sports needs to re-evaluate its relationship with painkillers and marijuana.

“Having gone through my own bout with chronic pain, I know enough about this stuff – Vicodin is not good for you. It’s not,” said Kerr. “It’s way worse for you than pot, especially if you’re looking for a painkiller and you’re talking about medicinal marijuana, the different strains what they’re able to do with it as a pain reliever. And I think it’s only a matter of time before the NBA and NFL and Major League Baseball realize that.”

I Miss the Person I Used to Be

By Deanna Singleton, Guest Columnist

I'm not the same person I was 8 years ago. It's not because I went through a tragic life experience or that I finally figured out the point of life.

It was that one day, all of a sudden, I opened my eyes in the morning and both my legs were in pain. And over the course of the last 8 years it keeps getting worse. I have advanced spinal stenosis, three bulging discs and degenerative disc disease.

It’s now to the point that at the age of 36, it takes everything I have to get in the shower or to just make a dinner for my kids and hubby. And if I actually do take a shower or do dishes, I'm usually in tears from the pain. I can't move the rest of the day from that small activity. Some days, just the water hitting or running over my skin is enough to make the average person want to die.

I want my life back. I didn't ask for this daily pain.

The first thing I think about when I open my eyes in the morning is where are my medications. I have to take pain medication just to walk through my house or to play with my children.

DEANNA SINGLETON

I used to have a very clean home. Now, not so much. Now it’s normal to walk into my home and see a mountain of clothes filling one whole couch. I loved to clean my house and make it a beautiful home for my family. I used to be out in my garden or flower beds, because that's my happy place. But I can no longer go there.

I used to be able to take my three girls on a walk to the park. Or walk the mall. Now I'm just lucky to be able to walk the grocery store, using the cart as a walker just long enough to get stuff for dinner.

Last but not least, I used to be a great wife. Smiling, happy and at the door to greet my husband after working a long hard day, with makeup and hair done. To make sure he remembers why he comes home every day. 

It's hard to feel pretty when you hurt so bad. Now I'm probably on the couch or in bed with my pajamas still on. With no makeup and hair in a messy bun. No more greetings at the door. And a smile no where to be found.

I used to be a great partner who was loving and affectionate. Who made sure my husband was happy in every way. Now it hurts so bad that we both just feel terrible afterwards.  Me because of the pain level, and him because he feels bad and that it's his fault now.

I used to work at two jobs, until I lost my pain meds due to my doctor not being comfortable any longer prescribing opioids because of the CDC guidelines and our local DEA. I was told by the doctor that he could no longer prescribe my medication.  And just like that, I went from 190 mg of oxycodone a day down to zero. No tapering.  My body then went into massive withdrawal.  I thought I was going to die. And since then I can no longer work.

In the state of Oregon we find no relief or sympathetic doctors who are willing to prescribe these life saving opiates that have been proven to give me my life back. And it's all because doctors are too scared of the CDC and the DEA to treat us patients, who rely on these meds to have any function or quality of life.

I have never wanted someone to cut into my body so bad. But no surgeon will do my surgery till I turn 40. My primary care provider will barely give me tramadol.  I've been to every specialist possible. And gone through countless medications, physical therapies and injections.

I'm just asking our medical doctors to do the job they once probably loved and not be so afraid to treat their patients as they know best. And let me be the mom and wife I used to be, and know I can be once again.

I just want my life back. For my kids, my marriage and for a somewhat active life.  I will start my life at 40.  I will probably be the happiest woman ever to return 40.

Deanna Singleton lives in Oregon with her family.  She is a proud supporter of #PatientsNotAddicts on Facebook and on Twitter.

Pain News Network invites other readers to share their stories with us.  Send them to:  editor@PainNewsNetwork.org.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represent the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

Stem Cell Therapy: Hope or Hype for Pain Patients?

By Pat Anson, Editor

The testimonials sound so encouraging. Chronic pain from arthritis, neuropathy and degenerative disc disease begins to fade after a single injection of stem cells.

“The next day after a needle went in there, the next morning they felt better. Immediately,” says 93-year old Curtis Larson, who suffered from neuropathic pain in his feet and ankles for nearly a decade.  

"Pain’s all gone. Completely gone,” Larson says in a promotional video hosted on the website of Nervana Stem Cell Centers of Sacramento, California.     

“You don’t have to accept chronic joint pain as a fact of life. There’s still hope even if medications and other treatments haven’t worked for you. Our practitioners can explain to you how stem cell treatments work and whether you can benefit,” the Nervana website states. “Relief may be on its way!”

We’ve written before about experimental stem cell therapy and how injections of cells harvested from a patient’s bone marrow or blood are being used to treat chronic conditions such as low back pain.

Professional athletes such as Kobe Bryant and Peyton Manning have used one stem cell treatment – known as platelet rich plasma therapy -- to recover from nagging injuries and revitalize their careers.

But has stem cell therapy moved beyond the experimental stage? Is it ready for widespread use?

“Published data derived primarily from small, uncontrolled trials plus a few well-controlled, randomized trials have not reliably demonstrated the effectiveness of stem-cell treatments,” wrote FDA commissioner Robert Califf, MD, in a commentary recently published in the New England Journal of Medicine – an article clearly aimed at throwing cold water on some of the hype surrounding stem cell treatment.

Califf and two co-authors said there is simply not enough evidence to support some of the newer stem cell therapies – such as cells harvested from a patient’s body fat (adipose tissue).

“The safety and efficacy of the use of stem cells derived from peripheral blood or bone marrow for hematopoietic reconstitution are well established. Increasingly, however, hematopoietic stem cells and stem cells derived from sources such as adipose tissue are being used to treat multiple orthopedic, neurologic, and other diseases. Often, these cells are being used in practice on the basis of minimal clinical evidence of safety or efficacy, sometimes with the claim that they constitute revolutionary treatments for various conditions,” they wrote.

But the lack of evidence and FDA approval haven’t stopped stem cell clinics from popping up all over the country. Over 570 such clinics now operate nationwide, with over a hundred of them in California alone, according to the Sacramento Bee. Some clinics – such as Nervana Stem Cells – are hosting free seminars for chronic pain patients, publicizing them with advertisements that read, “We want you to start living your life pain free!”

A Sacramento Bee reporter attended one seminar and listened to a former chiropractor who works for Nervana tell the audience that they can lower their pain scores from 8’s and 9’s to “mostly 0’s and 1’s” after 16 weeks of injections. He said the clinic has a 90 percent success rate.

Nervana does not use stems cells derived from bone marrow, blood or body fat, but uses a solution of embryonic stem cells from the “after-birth of healthy babies,” the Bee reported. Costs ranged from $5,000 for a single joint injection to $6,000 for a spinal injection. Stem cell therapy is not usually covered by insurance.

“It’s quite clear that these people are offering treatments that haven’t been tested in clinical trials. It’s a little concerning,” Kevin McCormack, a spokesman for the California Institute of Regenerative Medicine told the Bee.  

“There’s a gray zone where these clinics are operating,” he said. “The FDA needs to address the issue of these clinics and address this slow, onerous approval process for stem cell therapy.”

The FDA’s Califf says the agency is not trying to stifle research into a promising new field of medicine -- it’s just waiting for proof that the treatments work and don’t cause harmful side effects. He cited cases in which stem cell patients developed tumors or went blind after injections.

“Such adverse effects are probably more common than is appreciated, because there is no reporting requirement when these therapies are administered outside clinical investigations,” Califf wrote. “The occurrence of adverse events highlights the need to conduct controlled clinical studies to determine whether these and allogeneic cellular therapies are safe and effective for their intended uses. Without such studies, we will not be able ascertain whether the clinical benefits of such therapies outweigh any potential harms.”

Wear, Tear & Care: Needling Away Pain

By Jennifer Kain Kilgore, Columnist

One would think that encouraging inflammation is a bad idea, right?

“Let’s stick you with needles, inject a dextrose solution, and create some new tissue. It’ll be great!”

That’s what my dad has been saying since 2004. He had prolotherapy done for his low back in college, and it did wonders for him. I was extremely dubious. It sounded far too strange – injecting a sugar solution? Into my neck?

I have very extensive injuries from two separate car accidents. To sum it up quickly, I have badly-healed thoracic fractures, bulging lumbar discs hitting nerves, and two cervical fusions that cause a lot of post-surgical pain. The idea of purposefully creating more inflammation sounded insane. But after my second fusion, when the pain started increasing no matter how dutifully it was treated, I decided to give it a try.

Prolotherapy, or sclerosing injections, is still considered a bit radical, even though it’s been around since the 1930’s. The reason for the mystery is because there haven’t been enough double-blind studies conducted yet.

It’s a non-surgical ligament and tendon reconstruction injection designed to stimulate the body’s natural healing processes. By creating inflammation, you prod the body to create new collagen tissue and help weak connective tissue become stronger.

Because I live in the Boston area, that meant the drive to the doctor’s office was an hour each way. Most people do each area (lumbar, thoracic, cervical) separately, and each area takes approximately five rounds of shots. For me, that would’ve meant an eternity of needles.

I chose the insane route: five weeks of intense pain, meaning five weeks of all three areas at the same time.

It’s not supposed to hurt that much – people can take an aspirin and go to work after the appointment, grumbling about their aching knee. My pain response has become far more sensitive in my back and neck since the accidents, so what’s like a bee sting for other people is like thick surgical needles for me.

As such, it was hellishly difficult. Each appointment was on a Wednesday and took about fifteen minutes. The doctor injected my low back and then let me rest with an ice pack down the back of my pants. Then he injected my neck, loading me with more ice packs. Then, very gingerly, he approached the mid-back, which was the most damaged of all. He had to consult my MRIs for that one because the bones are not quite where they’re supposed to be.

For me, it took about an hour for the real pain to kick in, which gave me just enough time to drive home. The doctor numbed me with a topical anesthetic as well, so I sat on five ice packs and made the drive back to my house, where I collected all the ice packs in the freezer and arranged them on the recliner. Then I wouldn’t move for about two days. Sleeping was almost impossible without ice packs stuffed into my pajamas; I still can’t sleep on my back, two months later. Sitting like a normal human being was out of the question.

For five weeks, I spent the two or three days after shots recovering from absurd amounts of pain, and then by the time I’d recovered, it was almost time for the next round. My level of pain was far more than what other people online have reported. I also did a lot more shots at once than other people do. My experience was very much abnormal. But, most importantly: Did it work?

Well, yes. It did. Amazingly so. I’d told myself at the beginning that if this procedure controlled even 25 percent of the pain, that would be worth it. That would be worth the driving, the pain, and the out-of-pocket cost that isn’t covered by insurance.

My cervical fusions caused my arms not to work a lot of the time. Typing, writing, and using my hands for general tasks was very difficult and tiring. Additionally, my shoulder blades had what felt like black holes filled with electric fire. Nothing helped it. Nothing worked.

Two weeks into the prolotherapy regimen, my arms were fine and the black holes had disappeared.

I still have a lot of my daily low-grade, all-body pain. I still have massive headaches and neck pain. But my sciatica is also better, I’ve noticed – I was able to go to a rock park called Purgatory Chasm and clamber all over humongous boulders, and afterward I was only sore, not in agony.

So do I think it works? Absolutely. The other great part is that it’s supposed to last for at least a few years. Steroid injections only last a few months. I very much prefer this schedule.

If you can get past the “alternative therapy” label and can scrounge up the money to pay for it, I’d highly recommend prolotherapy. It worked for me, and I’m still waiting to see more of its effects. I hope that it works as well for you.

Jennifer Kain Kilgore is an attorney in the Greater Boston area who also works as a writer and editor in her spare time.  She has chronic back and neck pain after two car accidents.

You can read more about Jennifer on her blog, Wear, Tear, & Care.  

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

Living with Chronic Pain After Being Labeled an Addict

By Patricia Young, Guest columnist

I am writing this article from the perspective of a patient who has chronic back pain and also an unwarranted, doctor-imposed label of “addiction.”

As most people can imagine, having both of these problems -- chronic pain and a substance use disorder -- can be very difficult for a healthcare provider to manage. Imagine though how harmful it is when someone is diagnosed or labeled as an addict and it is not an appropriate diagnosis.

The new polite wording for addiction is "chemical dependence," "substance use disorder" or "opiate dependence."

But these terms are not helpful either, since they have the same meaning to most healthcare professionals, as well as the general public.

To make matters worse, I was totally unaware that this diagnosis was ever made and it was never explained to me that it would be in my medical record. I want to share some of the problems this has caused me.

The first time I thought something was wrong was when I found myself having severe eye pain. I called ahead to the emergency room to make sure they had an eye doctor available to see me and decided to go in when they said they did. Instead, I was examined by a physician’s assistant (PA) after he reviewed my medical records. He looked at my eye from a distance without using any diagnostic equipment, told me I had an infection, and gave me antibiotic drops for it. The eye drops only made the pain worse.

I thought it was odd since I had no eye drainage of any kind and never had such pain before with an eye infection. A few days later I learned I had a herpes sore in my eye. No wonder those eye drops didn’t work!

Not one medical doctor or PA had taken my pain seriously in the ER because I had been labeled as having “drug seeking” behavior. But I did not know that until much later.

At the time I was taking opioid pain medication prescribed by my doctor to treat chronic pain from a lower back injury and two back surgeries. Sometimes I have flare ups of severe pain in my left hip, groin and leg despite the prescribed opiate drugs.

I went another time to the ER in severe pain and was seen by another physician’s assistant. After looking at my medical record, the PA proceeded to tell me to get out of the ER as I lay there on a gurney. My husband and I had no understanding at the time why 3 security guards came and told me to get back in my wheelchair myself or they would pick me up and put me there.

My husband picked me up and we were escorted out the door. I was 59 years old, disabled and was no threat to anyone. It was at that point that I started to wonder what “red flag” was in my medical records to make them treat me like that.

Later I found out what that red flag was. A doctor had written down after one visit that I had a “history of addiction.” This was the first time I became aware of this. I really could not understand why since no medical person had ever said I may have this diagnosis or even mentioned the word “dependency” to me.

I later had to move to Florida from upstate New York because my disability made it hard to cope with harsh winter weather. After the move I had great difficulty finding a new primary care physician. I believe no doctor wanted me as a patient after they saw the diagnosis of “history of addiction.”

We all know how difficult it can be to deal with an individual with a drug addiction. It’s a diagnosis that follows people for a lifetime. Unfortunately, when it is made in error, it is very detrimental and can even be a factor in someone’s death. Not only can there be a huge physical ramification from a diagnosis of addiction, but it can do harm to a person’s mental and emotional health, as well as cause family problems. I know it has affected me that way. The diagnosis evokes many people to make judgements.

I had many angry responses from healthcare professionals in my times of real need. The ones that threw me out of the ER demonstrated their anger by tone of voice, gestures, and curtness. I felt hopeless leaving there and my husband was so stunned he had no words to say. It was a very dark time in my life that is difficult to forget.

It has been suggested to me that I now suffer with post-traumatic stress syndrome and anxiety. Doctors want me to take anti-hypertensive medications daily as a result. This very frustrating and damaging diagnosis has led me to distrust the very physicians I go to for help. My blood pressure is high in their offices but not at home.

I also wrestle now with the problem of feeling as if my reputation has been harmed. I am seen by doctors as untrustworthy and in denial since I disagree with the addiction diagnosis. The very medical system that I worked in for almost 35 years has now mislabeled me and treats me harshly at a time when I need care myself.

I strongly believe there needs to be more understanding within the medical community as well as the public arena about this problem. There is a definite difference between a physical dependence on a substance versus an addiction to it. An addiction diagnosis suggests that one has misused drugs and has a mental disorder.

I have been judged as one of those types of people and it’s wrong. I had many medical professionals come up to me and congratulate me for stopping my pain medication. I thought they were crazy. It was no mental feat to stop taking the drugs, but I must admit my body’s physical reaction was not good. That is normal for someone that has taken opioid pain medicine for a period of time.

It is time we stop hurting and stigmatizing pain patients in this manner. It just makes our pain worse and can even lead to serious mental health problems and in some cases suicide.

Please healthcare providers, make sure your diagnosis is made correctly. I believe that an addiction or dependency diagnosis should only be made by someone who is trained in addiction medicine and who specializes in treating addictive disorders.

Patricia Young lives in Florida.

Pain News Network invites other readers to share their stories with us.  Send them to:  editor@PainNewsNetwork.org. 

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

Senza Stimulator Rated More Effective Long Term

By Pat Anson, Editor

A two-year study of an innovative spinal cord stimulator shows the device is more effective at relieving chronic back and leg pain long term than traditional stimulators.

The Senza HF10 spinal cord stimulator uses high frequency pulses of 10,000 Hz to mask a patient’s perception of pain. Traditional stimulators typically use lower frequencies at 40 to 60 Hz.  

Spinal cord stimulators (SCS) are often considered the treatment of last resort for chronic back and leg pain, because the devices have to be surgically placed near the spine and connected to batteries implanted under the skin. The devices send electrical impulses into the spine to mask pain.

In a study of 171 patients with implanted SCS devices, 76% of those with back pain and 73% with leg pain had pain relief after 24 months with the Senza HF10. That compares to about 50% of the patients implanted with a traditional stimulator.

image courtesy nevro

The Senza stimulator is made by Nevro Corp. (NYSE: NVRO) a medical device company in Redwood City, California.

"By demonstrating a significant and durable decrease in back and leg pain over a two-year period, Nevro's HF10 therapy represents an important and evidence-based advance in pain medicine,” said Leo Kapural, MD, the lead author and principal investigator of the study, which is published in the journal Neurosurgery.  

“Extending comparative safety and efficacy outcomes from 12 to 24 months provides physicians, patients, and payers with rigorous evidence demonstrating the durability of SCS in treating chronic pain.”

The Senza SCS was approved by the Food and Drug Administration last year. It has been available in Europe and Australia for several years.

Nevro says the HF10 stimulator is the only SCS therapy that provides pain relief without paresthesia -- a tingling or buzzing sensation that lower-frequency stimulators use to help mask pain signals. Some patients have found paresthesia uncomfortable.

MarketsandMarkets, a market research firm based in Dallas, estimates the global market for spinal cord stimulators and other neuromodulation devices could reach $6.8 billion by 2017.

Study Finds Racial Disparity in ER Opioid Prescriptions

By Pat Anson, Editor

Black patients who visit hospital emergency rooms with back and abdominal pain are significantly less likely to receive opioid prescriptions than white patients, according to a large new study published in PLOS ONE

The study, led by researchers at Boston University Medical Center, looked at data involving over 36 million emergency room visits in the U.S. from 2007 to 2011. No previous studies have examined racial disparities involving opioid prescriptions in ER settings.

The researchers found that opioids were prescribed for blacks at about half the rate for whites for vague “non-definitive conditions” that do not have an easy diagnosis -- such as back and abdominal pain.

No racial prescribing differences were found for ER visits involving fractures, kidney stones or toothaches – which are easier to diagnose.

The authors concluded that ER doctors may be relying on subjective cues such as race when deciding whether to prescribe opioids.

“These disparities may reflect inherent biases that health care providers hold unknowingly, leading to differential treatment of patients based on their race,” wrote co-authors Yu-Yu Tien of the University of Iowa College of Pharmacy and Renee Y. Hsia of the University of California at San Francisco.

“Healthcare providers carry inherent human biases, which can impact their prescription practices, especially in situations that do not lend themselves well to objective decisions. Racial-ethnic minority patients, especially non-Hispanic blacks presenting with vague conditions often associated with drug-seeking behavior, may be more likely to be judged as ‘a drug-seeker’ relative to a non-Hispanic white patient, presenting with similar pain-related complains.”

The authors noted that a recent study in JAMA found that prescription opioid abuse and addiction were actually more likely among whites than Hispanics and non-Hispanic blacks.

“In light of this, our findings raises a perplexing question as to whether it is non-Hispanic blacks who are being under-prescribed, or is it non-Hispanic whites who are being over-prescribed. Paradoxically, then, while non-Hispanic blacks do not benefit from bias, they might be inadvertently benefitting by receiving fewer opioid medications and prescriptions,” they wrote.

In their analysis of emergency room visits, the researchers also found that uninsured patients and those on Medicaid were less likely to receive an opioid for “non-definitive conditions” than those with private insurance.

A small study at the University of Virginia also found signs of racial bias involving pain care in a survey of white medical students. Researchers asked 222 medical students and residents a series of hypothetical questions about treating pain in mock medical cases involving white and black patients suffering pain from a kidney stone or leg fracture.  

Many of the students and residents were found to hold false beliefs, such as believing that black people's skin is thicker and that their blood coagulates faster than whites.  Half of those surveyed endorsed at least one false belief; and those who did were more likely to report lower pain ratings for black patients and were less accurate in their treatment recommendations for blacks.

Living My Retirement in Pain

By Marleina Hampton, Guest Columnist

At the age of 66, I never thought I would be living my retirement life in pain.

At age 13 I was diagnosed with scoliosis, a curvature of the spine. The choice was made that I would wear a cast from my collarbone to my pelvis in order to "hold" the spine straight. Surgery was not an option.

During my late 20's, my back started to bother me and by the time my 30's arrived, I was in pain after standing or sitting. When I moved to California in 1990, I started looking for ways to treat this pain that was getting steadily worse. I did physical therapy, epidurals, prolotherapy and every other office procedure known to man, without success.

In 2003 when the pain was so bad I wanted to die, I had my first back surgery, which gave me some relief. But it wasn't long before I was suffering again.

Fast forward to 2012, I relented and had spinal fusion surgery at Cedars-Sinai Medical Center. My back is now fused from T10 to S1, with two titanium rods and 20 screws.

My doctor told me that I would be on some type of pain medication for the remainder of my life. I saw several pain management doctors and finally asked my primary care provider if he would take over my pain management.

MARLEINA HAMPTON

In 2015, my husband retired and we moved to Prescott, Arizona. Little did I know that my nightmare was just beginning! I couldn't find a doctor who would accept me as a patient!  Prescott has a high number of addiction recovery homes and the pain management doctors refuse to accept appointments without a referral.

I spent weeks trying to find a doctor and was told by medical professionals that they are not comfortable having me as a patient! Just recently, I drove almost 2 hours through rain, ice, and snow to see a pain management doctor in Phoenix. I thought I would receive a higher level of care in a larger city. But when he found out that I was not a candidate for epidurals, he said he wasn't comfortable having me as a patient. That his practice did not prescribe drugs!

In tears, I called my doctors in California and they too were appalled that I was being treated this way. Never in my life did I have a problem receiving medication.

I finally found a doctor who agreed to prescribe pain medication for me. Now I go in every month to pick up my prescriptions. I was told that my doctor continues to receive emails asking him to cut down on the number of opioid prescriptions he writes. He knows what my life would be like with pain medication and said he would fight for me.

If I should be denied pain medication, I will probably join the ranks of many before me who have taken their lives because they no longer can cope with the pain. Every month I wonder if this is the month that my doctor will get tired of the battle. This is not the retirement life I had imagined.

Marleina Hampton lives in Prescott, Arizona.

Pain News Network invites other readers to share their stories with us.  Send them to:  editor@PainNewsNetwork.org. 

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represent the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

Opioids Provide Only ‘Modest’ Relief for Low Back Pain

By Pat Anson, Editor

Lower back pain may be the world’s leading cause of disability, but there is surprisingly little evidence about the best ways to treat it – including the use of opioid pain medication.

A new study published in JAMA Internal Medicine adds a little clarity to the issue.

In a systematic review of 20 clinical studies involving nearly 7,300 patients, researchers found evidence that opioid medications provide only “modest” short-term relief from lower back pain.

“In people with chronic low back pain, opioid analgesics provide short and/or intermediate pain relief, though the effect is small and not clinically important even at higher doses,” said lead author Andrew McLachlan, PhD, a professor of pharmacy at the University of Sydney in Australia.

Opioids were found to be no more effective than non-steroidal anti-inflammatory drugs (NSAIDs). About half of the patients involved in the studies dropped out because they didn’t like the side-effects of opioids or because they found them to be ineffective.

“Our review challenges the prevailing view that opioid medicines are powerful analgesics for low back pain. Opioid analgesics had minimal effects on pain, and even at high doses the magnitude of the effect is less than the accepted thresholds for a clinically important treatment effect on pain,” McLachlan wrote.

Although nearly a quarter of the opioid prescriptions written in the U.S. are for low back pain,  medical guidelines often recommend against it.

“Whereas there is evidence for significant short-term pain relief, there is no substantial evidence for maintenance of pain relief or improved function over long periods of time without incurring serious risk of overdose, dependence, or addiction,” wrote Gary Franklin, MD, in a position paper  adopted by the  American Academy of Neurology.

Franklin, who is vice-president of Physicians for Responsible Opioid Prescribing (PROP), also helped draft the recent opioid guidelines adopted by the Centers for Disease Control and Prevention.

“Evidence is limited or insufficient for improved pain or function with long-term use of opioids for several chronic pain conditions for which opioids are commonly prescribed, such as low back pain,” the CDC guidelines state. “Several non-opioid pharmacologic therapies (including acetaminophen, NSAIDs, and selected antidepressants and anticonvulsants) are effective for chronic pain. In particular, acetaminophen and NSAIDs can be useful for arthritis and low back pain.”

A large study recently published in the British Medical Journal reached a different conclusion than CDC – finding that there was little evidence that acetaminophen – also known as paracetamol – was effective in treating low back pain. Another study published in The Lancet reached a similar conclusion.

Who should patients believe with all this conflicting advice?

Perhaps the best therapy can’t be found in a pharmacy or drug store.

A recent study published in JAMA Internal Medicine found that regular exercise and education about its benefits reduce the risk of developing lower back pain by as much as 45 percent.

“If a medication or injection were available that reduced LBP (low back pain) recurrence by such an amount, we would be reading the marketing materials in our journals and viewing them on television. However, formal exercise instruction after an episode of LBP is uncommonly prescribed by physicians,” wrote Timothy Carey, MD, and Janet Freburger, PhD, of the University of North Carolina at Chapel Hill.

Over 80 percent of us suffer acute low back pain at least once in our lives, and about half will experience a recurrence within one year. 

Hip Fractures Often Ignored as Sign of Osteoporosis

By Pat Anson, Editor

Most older adults who suffer hip fractures aren't told they may have osteoporosis, despite the fact that hip fractures nearly always signify the presence of the bone weakening disease and can result in serious complications, according to a small survey of patients.

More than 10 million Americans suffer from osteoporosis and 44 million have its precursor, a loss in bone density that raises the risk of fractures and disability.  Studies have found that breaking a bone in your spine or hip may be so traumatic that it doubles your chances of developing chronic widespread body pain.

"You can die after a hip fracture, and you're at great risk of prolonged complications," said Gisele Wolf-Klein, MD, director of geriatric education for Northwell Health, the largest healthcare provider in New York state.

"You can also be left as an invalid, a fear of many older adults. When we think about how preventable hip fractures are, the fact that most patients aren't told or understand they have osteoporosis - a disease that can be treated - is an enormous problem."

Wolf-Klein and her colleagues surveyed 42 hip fracture patients aged 65 and older, and found a startling level of misinformation and mismanagement surrounding osteoporosis. 

A majority (57%) of patients said their hospital physicians did not recommend osteoporosis medication after treating their hip fracture. One in four patients said they would reject taking the drugs.

Nearly two-thirds (64%) of those who said they were being treated for osteoporosis were taking calcium and vitamin D supplements, which the Northwell researchers say are "useless" at preventing osteoporotic fractures.

More effective osteoporosis medication - which maintains bone density and lower the risk of a fracture - is available in many forms, including twice-yearly infusions or weekly pills. But the researchers say they're not prescribed as often as they should be.

"There's an enormous amount of misunderstanding about osteoporosis among the public and lack of education from physicians taking care of patients,"  said Stuart Weinerman, MD, an endocrinologist at Northwell Health, "Doctors don't talk about it and the perception is that these osteoporosis drugs are dangerous or not effective. Unfortunately, these misperceptions are just incorrect. So a lot of public education needs to be done, but it should start with physicians."

Lack of effective treatment can lead to additional fractures. Over a third of the patients surveyed sustained a fall within a year, and nearly half (44%) suffered an additional fracture.

"These numbers show the need to improve our overall treatment plan for osteoporosis, which includes fall-prevention education for patients and their families," said Mia Barnett, MD, a Geriatric fellow. "We can definitely get that re-fracture number lower if patients are treated with osteoporosis medications."

A quarter-million Americans sustain a hip fracture each year, according to the National Osteoporosis Foundation, but less than a quarter are treated for osteoporosis afterwards.

A recent study found that elderly men are far less likely to be screened for osteoporosis or to take preventive measures against the bone-thinning disease than women. The risk of death after sustaining a hip fracture is twice as high in men compared to women.

A large study of over half a million adults, published in the Archives of Osteoporosis, found that men and women who had a spine fracture and women who had a hip fracture were more than twice as likely to experience long term widespread pain.

Study: Some Brains ‘Hardwired’ for Chronic Pain

By Pat Anson, Editor

Why do some people develop chronic pain from an injury or illness, while others do not?

The answer to that question may really be all in our heads.

A groundbreaking study by scientists at Northwestern University and the Rehabilitation Institute of Chicago (RIC) found that some people are genetically predisposed to chronic pain because of brain “abnormalities” that raise their risk of developing chronic pain. The findings challenge long-standing views on the science of pain, which emphasize treating pain at the site of the initial injury.

"While simple, the logic of addressing problems at the site of an injury to remove pain has resulted in only limited success," said senior study author Marwan Baliki, PhD, a research scientist at RIC and an assistant professor of physical medicine and rehabilitation at Northwestern University Feinberg School of Medicine.

"The central processes of chronic pain have largely been ignored, so our research team set out to better understand the brain's role."

Baliki and his colleagues conducted the first longitudinal brain imaging study, which tracked 159 patients for three years following an acute back injury, along with 29 healthy control subjects.  

MRI brain scans were conducted on all of the participants five times during the course of the study.

The researchers found that patients who developed chronic pain from their back injury had a smaller hippocampus and amygdala compared to those who recovered from the injury and the healthy control subjects.

The hippocampus is the primary brain region involved in memory formation and retention, while the amygdala is involved in the processing of emotions and fear. In addition to size variations, these brain regions also showed differences in connections to the rest of the brain, particularly to the frontal cortex, an area involved in judgment.

Together, the researchers estimate that these brain differences accounted for about 60% of the chronic pain felt by participants.

Most importantly, the study also revealed that the volumes of the amygdala and hippocampus did not change over the course of the study, suggesting that those who developed chronic pain were genetically predisposed to it.  

"Here we establish that the gross anatomical properties of the corticolimbic brain, not the initial back pain, determine most of the risk for developing chronic pain," said first author Etienne Vachon-Presseau, PhD, a visiting postdoctoral fellow in physiology at Feinberg.

“As the anatomical risk factors were stable across 3 years, they were presumably hardwired and present prior to the event initiating back pain. These results pave the way for the development of novel and distinct approaches to prevention and treatment of chronic pain.”

The Northwestern and RIC study will be published in the June edition of the journal Brain.

Study Tests Stem Cells for Degenerative Disc Disease

By Pat Anson, Editor

An Australian biotech company is testing a new stem cell treatment for degenerative disc disease.

Mesoblast is enrolling patients in a Phase 3 study to see if a single injection of mesenchymal precursor cells (MPCs) taken from the bone marrow of healthy donors can relieve back pain and improve the mobility of patients with disc disease, which occurs when the cushions between vertebrae wear down because of aging, genetics or injuries.

Millions of MPCs are injected directly into the damaged disc in an outpatient procedure. Previous studies have found that MPCs have anti-inflammatory effects, and help strengthen and improve the stability of damaged discs. The treatment is being developed for patients who have exhausted other options for their back pain.

“Patients with this level of degeneration often try multiple treatments for relief, including pain medication, massage, physical therapy, chiropractic adjustments and acupuncture,” says lead investigator Kee Kim, MD, professor of neurological surgery and co-director of the University of California Davis Spine Center.

“For some of them, nothing seems to help, and we end up operating to remove the degenerated disc and fuse the spine to eliminate motion that may cause increased pain. We want to know if a single dose of this investigational therapy can offer relief without the need for surgery.”

UC Davis is one of 28 sites in the United States and Australia involved in the study. Participants with degenerative disc disease in the lower back will receive injections of either MPCs, MPCs with a carrier material (hyaluronic acid) or a placebo. Although the MPCs are collected from donors, tissue matching is not necessary.

Following treatment, participants will be evaluated by researchers six times over the course of a year. They also will be given the option to participate in an extension of the study to track their progress for three years after the initial injection.

Previous studies have found that MPCs have anti-inflammatory effects, and help strengthen and improve the stability of damaged discs. Researchers caution, however, that the treatment may not be effective for everyone.

“Many patients with back pain will not benefit from this stem cell therapy and may still require surgery,” Kim said. “For some patients, it could offer improvement. For these patients, it is worth exploring this alternative.”

You can find out more about the study by clicking here.

Montana to Host Arachnoiditis Seminar for Doctors

By Pat Anson, Editor

You might call it the world’s longest house call.

Dr. Forest Tennant, a pain management physician in West Covina, California, will travel nearly a thousand miles this summer to meet with patients and doctors in Helena, Montana. Tennant will lead a two-day seminar on arachnoiditis, a chronic and painful spinal disease that leaves many patients permanently disabled.

Tennant’s trip to Montana is a reversal of sorts. For years, dozens of desperate arachnoiditis patients from Montana and other states have traveled cross-country to see him at his pain clinic outside Los Angeles.

“In the past it was considered a rare disease with no hope. We can do a lot to diagnose and to treat it now,” says Tennant, who has done extensive research on the disease and has launched an Arachnoiditis Education Project for physicians.

Arachnoiditis has nothing to do with arachnophobia, a fear of spiders. It’s an inflammation of the arachnoid membrane that surrounds the spinal cord. Over time, the inflammation causes scar tissue to build around spinal nerves, which begin to adhere or stick together. This leads to adhesive arachnoiditis, which causes severe chronic pain and other neurological problems. The disease is progressive, incurable and difficult to treat.

Once considered rare, Tennant is seeing more and more cases.

FOREST TENNANT, MD

“Every pain practice I talk to now says ‘Oh, I have a patient with this.’ This is an emerging issue that every practice in the country will have to become aware of, just like Hepatitis C or AIDS or Lyme disease. It’s one of these diseases that’s here. It’s not going away. The fact is we’re all going to grow older and we all have spines that are going deteriorate. We’re going to end up with this. We have the technology and the knowledge now to diagnose it and the protocol to treat it.” 

Tennant uses a combination of pain medication, hormones and anti-inflammatory drugs to manage the symptoms of arachnoiditis and possibly stop its progression. He wants to share with Montana doctors what he’s learned.  

“We would like to identify some practitioners in the area who are interested in the disease and who would be willing to treat patients,” says Tennant. “We’d also like to foster the development of patient groups for self-support. Those are the two goals.”

Montana may be small in terms of population, but the Big Sky state has fostered some of the most vocal and educated grassroots activists in the pain community. Several have arachnoiditis, and after years of dealing with a healthcare system that failed to treat or even recognize their symptoms, they’re finally getting some attention.

Kate Lamport, a 33-year old mother of four from Helena, developed arachnoiditis after a series of epidural injections for child birth and bulging discs in her back. Her back pain was originally thought to be from fibromyalgia or Lyme disease, but on a trip to California to see Tennant a few months ago, she was diagnosed with arachnoiditis.   

“While I was there, I was blown away by the amount of people that have arachnoiditis and how undertreated and under acknowledged a disease it is,” says Lamport, who pitched the idea of a seminar to Tennant.

“I asked him if I put together a conference if he would speak at it and teach other doctors and patients that don’t have an opportunity to come see him,” says Lamport. “Doctor Tennant is so knowledgeable. If I call him and I say this is what’s acting up, he knows what to say and what to do. A month ago my adrenal glands shutdown and that’s when you die. And he knew what to do to get me out of that.”

Many patients are convinced they developed arachnoiditis after surgeries or epidural steroid injections that damaged their spines. But Tennant believes the underlying causes are more complex.

“There are several ways to get this. Unfortunately, there’s too much focus on medical procedures,” he says Tennant. “There are people we now know who have gotten it from viral infections, Lyme disease, auto-immune disorders, and what have you. There are a lot of different reasons why you get this and medical procedures can accelerate it.”

There’s a great deal of debate in the medical community over the value of spinal injections, surgeries, spinal cord stimulators and other “interventional” procedures to treat back pain. About 9 million epidural steroid injections are performed annually in the United States, often as a substitute for opioid pain medication.

Tennant says epidurals can be effective, but are increasingly overused, with some patients getting dozens of injections annually.

“Unfortunately, somebody who’s had a lot of back procedures is likely to end up with arachnoiditis. It’s a complication of medical procedures that may not be able to be avoided. And I want to make a point of this. Somebody who needs back surgery may have to take the risk,” he says.

The arachnoiditis seminar will be held July 9th and 10th at the Radisson Hotel in Helena, Montana's capital. For further additional information or to register for the conference, click here.

Montana Public Radio recently broadcast a two-part series on “pain refugees” leaving the state for treatment and the fear many Montana doctors have about prescribing opioids, which may have led one pain patient to commit suicide.