My Life and the War on Pain Patients

By Suzanne Stewart, Guest Columnist

One of the arguments against gun control is that the "bad guys" will always have access and the “good guys” will die because their weapons are taken away.

That’s what’s happening now to chronic pain patients! We are fighting a war against being robbed of the very weapons we need to fight. I have complex regional pain syndrome (CRPS) and I’m fighting to live not "pain free," but with less pain and more living.

Those in positions to help, need to take the time to do so. All 50 states now have proclamations that explain the burning, fire-like pain of CRPS.  They discuss allodynia, or extreme sensitivity to touch, and the pain it brings.

But all of this means nothing if the government, FDA,CDC, physicians, and pharmacies take away the means of lessening our pain. We follow the rules, sign contracts with our pain doctors, and jump through hoops to get what we need to try and live some kind of life.  

On the other side of the spectrum are those who don't follow rules and who break laws. But they have a different disease called addiction and they ruin it for all of us. Only about 5% of opioid prescribed patients are addicted, yet they are making us all feel like criminals.

Would these same agencies and officials take anti-depressants away from the hopeless, or insulin from a diabetic?  

suzanne stewart

The CDC’s new opioid prescribing guidelines could make things a lot worse next year. Many physicians are already  refusing to give medicine for pain when it is truly needed. But those who who are true addicts always find a way to get what they need, while law abiding citizens, suffering daily, have no means other than self advocating. We need to rally and try to do something about this travesty.

Remember, we are not addicts! We are patients with chronic pain, who’s bodies are dependent on medications that help us live. Without proper pain control, there's nothing left.

It is despicable that some pain doctors are being forced to push invasive surgeries on more patients. Physicians who pledged to "do no harm" will do surgery,  instead of prescribing the medicine so desperately needed for the real chronic pain population.

There are new controversial prescribing guidelines coming and some already in effect. These are leading to more and more restrictions put upon our primary care physicians and even tying the hands of our pain management doctors. The CDC, FDA, and other groups think that they know more about pain and pain management, but when have they ever studied such things?

They are making a fake war on prescription drugs, when it’s really some kind of smokescreen for saving money!

I say pick on the real criminals, not the chronic pain sufferers. I went through an awful experience last year, when my doctor of 12 years unexpectedly left his practice under a cloud of suspicion. I never wanted to take any of these meds. I never smoked or drank!  I was just naive enough to think that I could finally trust someone in this life and then the rug was pulled out from under me.

I've read that they are taking most pain medications away from anyone with non-malignant pain. Who are these non-medical personnel, these agencies, to say that malignant cancer pain is worse than non-malignant pain? Unless they've experienced either, how would they know? CRPS is #43 on the McGill pain index, right next to childbirth or amputation of a finger.

These lay people and agencies are trying to tell us that  exercise and healthy eating habits, along with physical therapy and "behavioral therapy," are alternatives to pain medication. They say that the goal is to stop the overdoses and prescription drug abuse.

The “addiction specialists” scream "HYPERALGESIA" to everyone on opioids for any length of time. They say the pain meds stop working and that we all get addicted!  We are all individuals whose bodies may become physically dependent,  but that's very different from addiction. If it is working, then how can it be hyperalgesia?

In all honesty, if the doctor  is a good one, he or she will only prescribe the amount needed. Why take it away if the patient and doctor are doing everything right and when it gives some relief?  The innocents should not suffer for the crimes of a few.

Many patient advocacy groups have written to the CDC and the FDA and explained that they are not being transparent. They used biased teams to make up these new rules and guidelines. They didn't listen to the voices of the doctors and patients who live in the pain world. Many of the people who put these new rules together have a monetary gain.

One physician wrote in the Pain News Network that he has had patients on high doses of opioids for over 20 years and they have led quality lives. He also agrees that taking these meds from patients who've been on long term dosages is cruel and inhumane.

Sometimes people who want to change things to save a few dollars or get their products pushed, such as spinal cord stimulators and pain pumps, are not thinking of patients like me, who do not fit inside a nice neat box. My issues are different. I need these pain meds to survive.

So many lives have been lost because pain was not mangaged well! Chronic pain can kill you because it causes so many other issues and there’s a snowball effect when pain is not controlled.

Please use your voice and be heard. We need to form advocacy groups that will work together for the common good. Let’s stick together and not allow ourselves to be treated so inhumanely.

Suzanne Stewart lives in Michigan. She suffers from CRPS and several other chronic pain conditions caused by a car accident.

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.

Fed Panel Opposes CDC Opioid Guidelines

By Pat Anson, Editor

A key government panel that oversees pain research will file a formal objection to proposed opioid prescribing guidelines being drafted by the Centers for Disease Control and Prevention (CDC). Those guidelines, which are set to be released next month, would discourage primary care physicians from prescribing opioid pain medications.

The National Institute of Health’s Interagency Pain Research Coordinating Committee believes there is little or no evidence to support many of the prescribing guidelines, according to Politico. Some committee members reportedly called the agency’s recommendations “ridiculous” and “an embarrassment to the government” during a meeting Thursday.

The pain research committee includes representatives from the Food and Drug Administration, Agency for Healthcare Research and Quality, Department of Veterans Affairs, Department of Defense, and the CDC itself.

Evidence cited to support the guidelines "is low to very low and that's a problem," said Sharon Hertz, the FDA's director of the Division of Anesthesia, Analgesia and Addiction Products.

The CDC unveiled the draft guidelines in September to a select online audience and then allowed only 48 hours for public comment. The guidelines, a list of which can be found here, recommend “non-pharmacological therapy” as the “preferred” treatment for non-cancer pain, and state that limited quantities and doses of opioids should be prescribed for both acute and chronic pain.  

Complaints immediately arose from physician organizations and patient advocacy groups that the guidelines were developed in secret, with too much input from special interest groups, addiction control specialists, and Physicians for Responsible Opioid Prescribing (PROP),  an advocacy group funded by Phoenix House, which operates a chain of addiction treatment centers. Five PROP board members, including its President, Vice-President and founder, are on committees that helped the CDC draft the guidelines.

The CDC developed the guidelines to combat what is often called an epidemic of prescription drug abuse and overdoses, but the agency’s own documents acknowledge there is “low quality of evidence” or “very low quality” to support many of its recommendations. For example, one guideline would greatly expand access to addiction treatment drugs such as buprenorphine and encourages physicians to refer patients to addiction treatment programs. Although "strongly recommended" by the CDC, the quality of evidence for that guideline is considered low.

The agency also admitted it rushed through the process, apparently to meet a January deadline.

“CDC conducted ‘rapid reviews’ of the contextual evidence on alternative treatments, benefits and harms, values and preferences, and resource implications. Rapid reviews are used when there is a need to streamline the systematic review process to obtain evidence in a short time frame. Methods used to streamline the process include limiting searches by databases, years, and languages considered, and truncating quality assessment and data abstraction protocols. Given the public health urgency of developing opioid prescribing recommendations, a rapid review was required for the current guideline,” the agency said in briefing documents obtained by Pain News Network.

A top official in the Department of Health and Human Services told the NIH research committee the CDC’s guidelines were “shortsighted” and there was a rush to judgement.

"You know, damn the torpedoes. Full speed ahead," said Wanda Jones, principal deputy assistant secretary for health at HHS, according to Politico.

Pain patients agree the CDC guidelines are shortsighted and could have a disastrous impact on the pain community. In a survey of over 2,000 patients by Pain News Network and the Power of Pain Foundation, over 90% said the guidelines were discriminatory and would be more harmful than helpful to pain patients. Most said they had already tried non-opioid treatments, such as massage, acupuncture and cognitive behavioral therapy, and found that they didn’t work. Many predicted the guidelines would lead to more suicides in the pain community, and cause more addiction and overdoses, not less.

Last month the Washington Legal Foundation (WLF) accused the CDC of “blatant violations” of federal law for not holding public hearings and refusing to publicly identify members of its advisory committees.

“The overly secretive manner in which CDC has been developing the Guideline serves the interests of neither the healthcare community nor consumers,” wrote WLF chief counsel Richard Samp to CDC director Tom Frieden.

The WLF has a lengthy history of taking government agencies to court to overturn regulations and policies it considers unfriendly to business.

Additional reporting for this story can be found in DrugWonks.

Genetic Defect Holds Secret to Pain Free Life

By Pat Anson, Editor

An experimental study on genetically modified mice may have uncovered a way to make low doses of opioids more effective in treating chronic pain.

Researchers at University College London are studying “transgenic” mice that were modified to carry a genetic mutation from humans who are unable to feel pain. The humans have a defect in their nervous system that prevents them from sending pain signals through a sodium channel known as Nav1.7. People born without working Nav1.7 can still feel touch normally, but not pain.

The researchers found that that mice who lack Nav1.7 produce higher than normal levels of naturally-produced opioids. Transgenic mice have twice the levels of natural opioids as unmodified mice from the same litter.

To block the effects of the natural opioids, the researchers gave the mice naloxone, an opioid blocker used in addiction treatment, and found that they became able to feel pain.

They also gave naloxone to a 39-year-old woman with the same rare mutation and she felt pain for the first time in her life.

"Studying the mice showed us what was going on in the nervous system that led to painlessness and our findings were directly translatable to humans, as confirmed by the painless patient,” said senior author Professor John Wood, University College London.

"The secret ingredient turned out to be good old-fashioned opioid peptides, and we have now filed a patent for combining low dose opioids with Nav1.7 blockers. This should replicate the painlessness experienced by people with rare mutations, and we have already successfully tested this approach in unmodified mice."

Broad-spectrum sodium channel blockers are already used as local analgesics, but they are not suitable for long-term pain management because they cause complete numbness and can have serious side-effects over time.

Opioid painkillers such as morphine are effective at reducing pain, but long-term use can lead to dependence and tolerance. As the body becomes used to opioids, they become less effective and higher doses are needed. Side effects also become more severe.

"Used in combination with Nav1.7 blockers, the dose of opioid needed to prevent pain is very low," explains Wood. "People with non-functioning Nav1.7 produce low levels of opioids throughout their lives without developing tolerance or experiencing unpleasant side-effects. We hope to see our approach tested in human trials by 2017 and we can then start looking into drug combinations to help the millions of chronic pain patients around the world."

Wood’s study is being published in the journal Nature Communications. Wood has filed for an international patent on his discovery.

Cancer Painkiller Blamed for Hundreds of Deaths

By Pat Anson, Editor

An Arizona drug maker that developed a powerful painkiller for cancer patients falsified records so the drug would be prescribed to non-cancer pain patients, possibly resulting in hundreds of overdose deaths, according to a new report by the Southern Investigative Reporting Foundation.

Subsys has FDA approval for breakthrough cancer pain, but Insys Therapeutics allegedly misled insurers into paying for the drug and encouraged off-label prescribing for patients suffering from conditions such as joint pain and post-traumatic stress disorder.

Subsys is a fentanyl based spray-on painkiller, said to be 100 times stronger than morphine.

The new report, headlined “Murder Incorporated,”  adds to the growing body of evidence and critical media reports about the aggressive business tactics of Insys Therapeutics. Last month CNBC accused the company of “putting profits before patients as it makes millions off your pain.”

"I've been investigating drug cases for about 15 years now, and the conduct that we saw in this case was among the most unconscionable that I've seen," Oregon Assistant Attorney General told CNBC. "There was harm done to patients on a level I'm not used to seeing."

image courtesy of insys therapeutics

Insys is under federal and state investigations in Oregon, California, Massachusetts, Connecticut, Arizona and Illinois. The company has settled a class action lawsuit in Oregon for $1.1 million and another in Arizona for $6.1 million.

The Southern Investigative Reporting Foundation has spent the past year investigating Insys and its business practices. It reported the company set up a special unit to help patients get prior authorization for Subsys prescriptions, often by falsely claiming they were medically urgent cancer diagnoses.

“Our findings suggest that the federal prosecutors are on to something. The prior authorization unit was set up to assist patients with complex insurance paperwork. Its value proposition was simplicity itself: the patient signs a few forms and Insys handles the messy paperwork. Patients would get the medicine, prescribers wouldn't have to scramble for a replacement and Insys would book thousands of dollars in revenue per prescription,” the report says.

Since Subsys was introduced in 2012, the FDAs Adverse Events Reporting System lists 203 deaths where Subsys was listed as the probable cause for triggering an adverse reaction. The pace of Subsys-related deaths is accelerating, with 52 deaths in the second quarter of this year alone.

“Depending on the dosage, one package of 30 Subsys sprays can cost between $900 and $3,000. Insys generates almost all of its revenue from Subsys. Last month the company reported over $91 million in revenue during the third quarter, beating estimates.

CEO Mike Babich resigned the day before earnings were released, saying he wanted to spend more time with his family.

“Insys is committed to developing products for the supportive care of patients through the use of its drug delivery technologies.  Insys takes patient safety very seriously and is committed to working with the health care community,” the company said in a statement. “Based on its interactions with patients and prescribers, Insys believes that the success of Subsys is directly attributable to the clinical benefits of its product.”

Can Marijuana Help Treat Heroin Addicts?

By Pat Anson, Editor

There’s a new twist to the rising use of heroin in the United States – and what can be done to help addicts in recovery.

A recent study by researchers at Columbia University found that medical marijuana improves the treatment outcome of heroin addicts. Patients who were given dronabinol -- a prescription drug that contains THC, the active ingredient in marijuana -- had lower withdrawal symptoms compared than those given a placebo. In addition, patients who smoked marijuana regularly during the outpatient phase of treatment had fewer sleeping problems, less anxiety and were more likely to finish treatment.

"One of the interesting study findings was the observed beneficial effect of marijuana smoking on treatment retention," the researchers concluded.

"Participants who smoked marijuana had less difficulty with sleep and anxiety and were more likely to remain in treatment as compared to those who were not using marijuana, regardless of whether they were taking dronabinol or placebo."

The Columbia study appears in the journal Drug and Alcohol Dependence.

According to High Times, several other studies have reached similar conclusions. Studies at the New York Psychiatric Institute found that opiate addicts who consumed marijuana intermittently were less likely to start using opioids again, compared to those who never used marijuana or used it habitually.

Earlier this year, researchers at the RAND Corporation and the University of California, Irvine reported similar results in a study for the National Bureau of Economic Research – going so far as to suggest that marijuana is a good substitute for opioid pain medication.

“Many medical marijuana patients report using marijuana to alleviate chronic pain from musculoskeletal problems and other sources. If marijuana is used as a substitute for powerful and addictive pain relievers in medical marijuana states, a potential overlooked positive impact of medical marijuana laws may be a reduction in harms associated with opioid pain relievers,” they wrote. “We find that states permitting medical marijuana dispensaries experience a relative decrease in both opioid addictions and opioid overdose deaths compared to states that do not.”

And what happens in states where regulations make it harder to obtain prescription opioid medication?

There were unintended consequences in Washington, one of the first states in the country to impose strict new guidelines on opioid prescribing. From 2008 to 2014, the number of deaths from prescription opioids in Washington fell from 512 to 319. But over the same period, the number of heroin deaths almost doubled, to nearly 300.

But the surge in heroin use wasn’t confined to Washington. According to the National Survey on Drug Use and Health, the number of heroin users nationwide rose from 161,000 in 2007 to 289,000 in 2013, an increase of nearly 80%. During the same period, the U.S. Centers for Disease Control and Prevention (CDC) reported the number of poisoning deaths involving heroin rose from 3,041 to 8,257, an increase of 172%.

“There is no robust evidence that recently enacted policies regarding prescription opioids are responsible for large-scale shifts to heroin,” the CDC’s Courtney Lenard recently told Alcoholism & Drug Abuse Weekly. Only about 1 in 25 people who use prescription opioids recreationally start using heroin within five years, she said.

Tommie Copper Tarnished By Fed Charges

By Pat Anson, Editor

Some of the shine has come off athletic apparel company Tommie Copper, Inc.

The company has agreed to pay $1.35 million to settle federal charges that it deceptively advertised its copper-infused compression clothing would relieve pain and inflammation caused by arthritis, fibromyalgia and other chronic diseases.

Tommie Copper’s settlement with the Federal Trade Commission also requires the company and founder Thomas Kallish to have “competent and reliable” scientific evidence before making any future claims about pain relief, disease treatment, or the health benefits of their products.

Tommie Cooper advertised its copper-infused garments in infomercials, brochures, social media, and print media such as Arthritis Today magazine. The ads claimed the clothing alleviated pain caused by multiple sclerosis, arthritis, and fibromyalgia; and could provide pain relief comparable to or better than drugs or surgery.

Some of the infomercials feature talk show host Montel Williams, who suffers from multiple sclerosis, declaring, “Tommie Copper truly is pain relief without a pill.”

 “It’s tempting to believe that wearing certain clothing will eliminate severe pain, but Tommie Copper didn’t have science to back its claims,” said Jessica Rich, Director of the FTC’s Bureau of Consumer Protection. “If you see an ad for a product that promises to replace the need for drugs or surgery, talk to a healthcare professional before you spend your money.”

The company’s website now only claims its products “can be worn all day to provide relief from everyday aches and pains.” The clothing, including sleeves, braces, shirts and socks, range in price from $29.95 to $69.50.

The proposed federal court order imposes an $86.8 million judgment against Tommie Copper, which will be suspended upon payment of $1.35 million by the company within seven days . The company neither admitted or denied any of the allegations in the settlement.

The so-called “healing power” and pain relieving power of copper can be traced back thousands of years. But a 2013 study by British researchers found that copper does nothing to alleviate the pain, swelling, or disease progression of rheumatoid arthritis. The study, published in PLOS ONE, found that copper bracelets worn by 70 patients provide no more meaningful therapeutic effect than a placebo.

Pot for Pain Approved in Minnesota

By Pat Anson, Editor

After months of debate, Minnesota’s health commissioner has decided to include chronic pain in the list of conditions that allow residents to legally use medical marijuana. They just have to wait another nine months before they can buy it.

Commissioner Ed Ehlinger said it was “the right and compassionate choice” to allow pain patients into the program.  Only nine health conditions currently qualify for marijuana prescriptions in Minnesota – and chronic, intractable pain won’t be added until August 1, 2016. Health care providers can start certifying intractable pain patients on July 1 of next year.

Ehlinger, who is a physician, said “the existing tools are not working well” to manage pain, according to the Minneapolis Star Tribune.

“There are strong and conflicting opinions ... in both the professional community and in the general population. However, as a physician who is concerned about the treatment each individual patient receives and as the Minnesota Health Commissioner who is concerned about the overall health of everyone in this state, I believe that adding intractable pain to the list of qualifying conditions for our medical cannabis program is the correct decision,” said Ehlinger

Last month a state advisory panel recommended against the inclusion of chronic pain in Minnesota’s marijuana program, saying cannabis was not a “magic bullet” and there wasn’t enough evidence to support its use for pain.

“Panel members expressed concern that patients eligible to use medical cannabis for pain have expectations that it would provide total relief and that such a perception may leave patients to abandon other proven pain-management methods, such as physical therapy,” the recommendation said.

“Panel members cited the recent opioid crisis, where good medications were demonized because prescribers used it to treat pain without knowing its proper uses. Even after studying the information available on medical cannabis, panel members said providers do not feel prepared to certify patients for its use.”

Over a dozen public hearings on the issue were held across the state, and the vast majority of speakers favored including intractable pain in the list of health conditions marijuana can be used for.

Intractable pain is defined as “a pain state in which the cause of the pain cannot be removed or otherwise treated with the consent of the patient and which, in the generally accepted course of medical practice, no relief or cure of the cause of the pain is possible, or none has been found after reasonable efforts.”

The nine conditions that currently qualify for medical marijuana in Minnesota are cancer, glaucoma, HIV/AIDS, Tourette Syndrome, Amyotrophic Lateral Sclerosis (ALS), seizures, severe muscle spasms, Crohn’s Disease and terminal illness. In addition to strict limits on conditions it can be prescribed for, medical marijuana is not available in leaf form and cannot legally be smoked in Minnesota.  It is only legal in a pill, vapor or liquid form.

The limits are so restrictive, less than 800 patients have enrolled in the program so far. Enrollment is expected to increase dramatically once chronic pain is included.

"Congratulations to the State  of Minnesota for now becoming a true state of compassion," said Ellen Lenox Smith, a medical marijuana advocate and a columnist for Pain News Network.  "I do hope that in the near future, they will also consider to adjust their stand on cannabis being sold only in pill or liquid form — nothing smoke-able.  For those of us in Rhode Island, we can choose to vaporize, use topicals, smoke if that is your only way to make it work for you, along with tinctures, drinks and edibles. We all have to find the right way to make this medicine work for our conditions, so may they realize their limitations are very controlling and holding back pain relief for many."

Minnesota is one of 23 states and the District of Columbia where medical marijuana is legal.

Going Off Morphine is Hell

By Crystal Lindell, Columnist

This past weekend, as I tried to get off morphine once and for all, one thought kept going through my mind — if the devil is any good at his job, hell will just be eternal opioid withdrawal.

It’s like, have you ever had the flu, and also food poisoning, and also been hit by a train, and also had the fight or flight anxiety that comes from being chased by a bear for a week straight — all the same time? Well it’s worse than that.

It’s effing hell.

And it’s all made even worse by the fact that I had the cure the whole time. Every single minute that went by, I knew that I all had to do to make it all go away was pop one of those little blue pills in my purse.

I made it to the 72 hour mark last night at midnight. That’s 72 hours without morphine or a hydrocodone. I haven’t gone a full 72 hours without an opioid in almost two and a half years.

I spent all of November tapering down my dose. Going so effing slow. Like three pills, then two pills, then three pills, then two pills. Then after a week, I’d do one pill then two pills, then one pill.

I was down to one pill every other day, of the lowest dose, and I knew the next step was going through withdrawal. I thought maybe it wouldn’t be that bad since I had been going so slowly with the tapering. I was wrong.

Honestly, the first 24 hours weren’t so bad. My body was just chilling, expecting another dose in a day or so. But then, at midnight, exactly 24 hours in, the involuntary leg movements started. I was lying in bed, in the middle of the night, and my right leg would just move. Also, my anxiety started skyrocketing so high you’d have thought I was in a war zone.

By the morning, about 31 hours in, the muscle aches had set in, and everything I had ever eaten over the last two years had started to come out. Diarrhea doesn’t sound like the worst thing in the world, until you literally spend so much time on the toilet that your legs go numb. And then when you do get up, you are so dehydrated that you can’t even walk without holding on to the wall.

There’s other stuff too, the kind of stuff that maybe sounds minor until it happens to you. Like, my nose was randomly running, and I was sneezing like there was a secret cat hidden in the bathtub. And I could not sleep. At all. And if somehow I did get a couple minutes of shut eye, I would wake up drenched in sweat. Also, everything made cry. Seeing the sun? Tears. Facebook posts about makeup? I’d start weeping. Basically the fact that I was alive was enough of a reason.

Again, all these things don’t sound so horrible, but when they are all happening at once, it is literally hell on earth. 

I spent most of the 72 hours watching Breaking Bad — which is either the worst show to watch during withdrawal because it’s all about drugs, or the best because it’s all about the horrible things drugs lead to.

I also spent most of the 72 hours trying to process how I got to this point. Morphine has been so good to me over the last two years. And I stand by the fact that it literally saved my life. If it wasn’t for the pain relief I got from the drug, I don’t know if I would have been able to endure. And I am thankful to morphine for that.

But I wouldn’t wish the morphine withdrawal on Hitler.

And I thought about everyone who has ever had to endure this for whatever reason. And my heart filled with compassion and love for them. Some people like to say that drug addicts are just weak, or lack self-control. Those people are a**holes.

I also thought a lot about how much I wanted to just pop a morphine and make everything better. I thought about it so hard. Vividly picturing the little blue pill in my head and fantasizing about how good it would feel to take just one.

And I thought about how going through withdrawal was a good thing because I wouldn’t even be going off morphine if I wasn’t feeling better. (See Crystal's last column: "Is Vitamin D Making Me Feel Better?")

I felt like this was a final step. A last stand by my pain to suck me in. I had to get off this drug to move on with my life. But it was so incredibly hard.

And I kept thinking about how, I am a good person. I am a strong person. I should be able to get through this. Why am I struggling so much?

My best friend was extremely supportive during the whole thing, constantly checking on me, praying for me, and sending me encouragement. And at one point she sent me a text that said, “I think the last two years were the toughest times of each of our lives (in different ways). Glad I get to see you on the other end.”

The other end. Wow. I honestly never thought I would ever get to see the other end. For a long time, I didn’t even think there was an “other end” to get to.

The idea that I could get to this proverbial “other end” though, it was enough to keep me going.

Honestly, I still feel like I was jumped, and then tossed in front of a train. But I’m doing a lot better than I was doing on day two. From what I can tell, the withdrawal symptoms can last anywhere from a week to months, but it’s those first 72 hours that are the most horrible. And I have made it through those.

I also discovered that there’s a cocktail of over-the-counter drugs that help. Specifically, I have been popping handfuls of Advil, Imodium and Benadryl.

I saw my brother this morning. And as I walked toward him, I felt like I was just regaining my footing after being in a plane crash. Still shaken up, disoriented and feeling like hell, I said, “Well, I’m finally feeling a little better. I made it to 72 hours.”

“Great. Now you have to make it a week,” he said.

Crap, I thought. He’s right.

Crystal Lindell is a journalist who lives in Illinois. She loves Taco Bell, watching "Burn Notice" episodes on Netflix and Snicker's Bites. She has had intercostal neuralgia since February 2013.

Crystal writes about it on her blog, “The Only Certainty is Bad Grammar.”

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.

My Life and the DEA

By Jaymie Reed, Guest Columnist

After going through eight years of a medical maze, I was finally diagnosed with a rare disease called Chronic Inflammatory Demyelinating Polyneuropathy (CIDP). 

It is a horrible disease with the myelin sheath being eaten away from my peripheral nervous system. I live with shooting, burning, cramping feverish pain in my legs every day. On most days I have difficulty walking, so I use a cane or walker just to try and not lose what muscle I have left, as CIDP eats away and kills the nerves that feed the muscle.

I am writing because each month I face being treated like a child or a drug seeking addict by all the healthcare providers around me. It isn’t because I have some bad history of being hooked on drugs -- it is simply because the doctors are concerned about writing prescriptions for opioid pain medications and what the DEA might do to them.

60 Minutes did a story on the heroin and opioid epidemic in our country, but it was on the side of the DEA and there was no mention of the patients that suffer.  The humiliation some patients experience merely trying to pick up their prescriptions each month is horrific. I hear stories every day about patients being treated like hardened criminals -- completely and utterly humiliated by pharmacists in front of people waiting for their prescriptions to be filled.

My local neurologist actually brought in his own pain management physician. At most pain management clinics, both you and Medicare pay top dollar for appointments and urine drug tests. In some cases, people are turned away from pain clinics if they refuse steroid injections, which are often done whether you actually need them or not.  These injections don’t last and for some can cause further damage, leaving behind scar tissue where the injections are made. 

jaymie reed

I was referred by my neurologist to see the pain management doctor. He wrote me a prescription for a drug that cost $587 for 28 pills (there was no way I could afford that) and then ignored my calls for a replacement prescription before offering the same medication that I had previously taken, that I had told him no longer worked for me. When I tried to contact him about this, my attempts were ignored. I was fortunate, as my neurologist decided to treat my pain himself.

Because of the fear the DEA has put into these doctors for prescribing pain medication, they are simply turning away some patients, which only ends up shifting them to pill mills. They throw gabapentin (Neurontin) at us like it is candy, along with any other anti-anxiety meds, but some of those drugs turn you into a drooling idiot! 

What I go through each month to get these prescriptions is nothing short of a nightmare, causing extreme stress which definitely worsens my disease.  The pain medication I am now works about 70% of the time and I live in pain for the other 30% because my neurologist will only prescribe one pain medication for me. He says the DEA will scrutinize him if he does more. He even shared with me that his office gets a magazine once a week with 70 pages of doctors being reprimanded by the DEA.

Our government has decided to take control of the healthcare system and be Big Brother to the very physicians that once took an oath to help people. They constructed a massive control system for ALL patients needing pain medications.  There is a huge difference in the patients that have legitimate illnesses struggling with pain versus the abusive doctor shopping drug seekers. No one has managed to separate or even see a difference between the two.

Because of what I endure at my neurologist’s office, I asked my primary care physician if he would consider managing my pain meds. He informed that he would not because he was moving away from prescribing any opioids at all because he was concerned about the DEA.  I am continually told this.  Seeking a second opinion on my progression, I am told -- without even asking -- that they don’t prescribe pain medications. I am told to seek care at a pain management center because they don’t want to maintain the control systems and record requirements. They are concerned about the risk of being reprimanded by the DEA.

Having once owned my own business, I wanted to feel useful and still contribute to society, so I started a Facebook group for people who have what we call invisible illnesses and have no support system.  We grew to about 500 people in 4 months. People would not believe the stories told about going through withdrawal alone, because their doctor just stopped prescribing pain medication. Or the countless visits to emergency rooms and being turned away because God forbid they treat them for one of the very purposes ER’s exist.

This has been nothing but a disaster for people who suffer with real pain on a daily basis.  This situation is causing extreme harm to those who have valid needs for pain management and no one cares enough to help us because of the 16,000 deaths last year from overdosing.  Not to take away from those deaths, but that number isn’t even in the top 10 causes of death in America.

This is being blown so out of proportion in the media, as most things are, and anyone with any amount of intelligence can see that this nothing more than some witch hunt. People are paying dearly for the mistakes some have made at the hands of a few irresponsible doctors and it hasn’t stopped them at all. There must be something illegal about physicians not treating patients because they are afraid of the DEA. 

I am not writing just for myself but for all of us that suffer with legitimate documented medical need.  The DEA has its database for flagging addictive behavior, so why not let the DEA flag patients and take some of the fear away from the physician?

I am tired of fighting and, like many, am almost to the point of giving up all treatment and letting nature take its course. No one that is ill should have to fight for any kind of treatment. Those of us on disability already have to fight the medical bill/co-pay nightmare. We fight to just make it to the grocery store or pick up our Rx’s. We shouldn’t have to fight with the physicians we put our trust in to help us.   

The big rig that the DEA and now the CDC are plowing down the political healthcare road is going at such a fast speed that no one can stop them, even to take a look at their license.

One of the biggest problems we face is that the very people who are suffering are the ones that need to speak out, but won’t. They won’t sign petitions because they are afraid the pain medication they need will be taken from them.  We have to find a way to get these people to speak out. We have to give them a voice, because if we don’t none of this is going to change.

I will gladly stand up and speak out. And if the DEA takes my meds from me, then so be it. God will take care of the rest!

Jaymie Reed lives in Texas.

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.

New Spinal Cord Stimulator Doesn’t Need Recharging

By Pat Anson, Editor

A new high-tech spinal cord stimulator is being launched in the U.S. and Europe, the first of its kind that doesn’t need recharging and can receive technology upgrades.

St. Jude Medical’s Proclaim Elite stimulator allows patients and clinicians to upload software upgrades to the device without surgery. Until now, most patients would require additional surgery to either update their devices or receive new ones. Unlike other spinal cord stimulators (SCS), the Proclaim Elite also doesn’t need recharging.

Stimulators are surgically placed near the spine and connected to batteries implanted under the skin. The devices send electrical impulses into the spine to mask pain.

“We developed the Proclaim Elite SCS system to create a more patient-centric spinal cord stimulation therapy option,” said Allen Burton, MD, medical director of neuromodulation and vice president of medical affairs at St. Jude Medical.

“The Proclaim Elite SCS system offers patients a combination of advanced pain therapy options and the convenience of a device that doesn’t require recharging, while removing barriers for future therapy and diagnostic options.”

The U.S. Food and Drug Administration approved the Proclaim Elite system earlier this month.

The device uses "burst" stimulation -- intermittent pulses of electrical energy that are designed to mimic the body’s natural nerve firing patterns. St. Jude says burst stimulation significantly reduces or eliminates paresthesia, the tingling sensation commonly associated with traditional SCS devices.

image courtesy st. jude medical

Many design elements of Proclaim Elite are based on physician and patient feedback. In particular, the non-rechargeable system removes the burden of patients needing to regularly recharge their SCS system. By providing access to both traditional SCS and burst stimulation in one system, the device gives an option to patients who don't initially respond to traditional therapy

“We’re seeing a shift in the SCS treatment paradigm as we move to a device that’s capable of delivering effective therapy tailored to a patient’s pain condition but that requires no device recharging,” said Frank Huygen, MD, an anesthesiologist and pain specialist from Erasmus MC Hospital in the Netherlands. “By combining burst stimulation and upgradeability in a non-rechargeable device, this innovative technology ensures physicians are more empowered to deliver therapy that can appropriately address our patient’s pain.”

The device uses Bluetooth wireless technology and Apple mobile devices for the patient controller and clinician programmer to improve interaction and allow for more effective management of chronic pain. Proclaim Elite also has conditional magnetic resonance (MR) labeling, which will allow patients to safely undergo MRI scans.

Chronic back pain is usually treated with physical therapy, pain relievers, injections or surgery. When those treatments fail, SCS devices are usually considered the treatment of last resort.

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.

Exercise Helps Reduce Chronic Pain of Fibromyalgia

By Pat Anson, Editor

This is the time of year when people start thinking of New Year’s resolutions – and losing weight and getting more exercise are two of the most common ones. New research suggests fibromyalgia sufferers should consider them both to relieve pain and improve their quality of life.

Exercise is known to relieve some types of chronic pain, but researchers at the University of Granada in Spain wanted to know what types of fitness are most effective in decreasing pain and improving mood in fibromyalgia patients. Fibromyalgia (FM) is a poorly understood disorder that is characterized by deep tissue pain, fatigue, depression and insomnia.

Researchers enrolled 468 female fibromyalgia patients in the study to assess their aerobic fitness, muscle strength, flexibility and motor ability. The study, published in the journal Arthritis Care & Research, also used a scale to quantify the women’s emotional response to chronic pain, such as catastrophizing (viewing something worse than it actually is) and self-efficacy (belief in the capacity to control things).

“Overall, higher physical fitness was consistently associated with lower levels of pain, lower pain-related catastrophizing, and higher chronic pain self-efficacy,” the researchers found.

Women with high muscle strength and high flexibility had the lowest levels of pain; and those with high flexibility and aerobic fitness had the best catastrophizing and self-efficacy profiles.

Another study, published in the Journal of Clinical Rheumatology, found that fibromyalgia patients were more likely to exercise less, be overweight, depressed, and take more medications.

Researchers at the Cleveland Clinic enrolled over 300 fibromyalgia patients in the study and collected detailed information about their demographic, socioeconomic, clinical, medical, surgical, and psychiatric history.

Nearly three quarters of the participants were either overweight or obese, as defined by the World Health Organization’s BMI (body mass index). Less than 10% of the obese patients said they performed regular aerobic exercise.

Obese patients were also significantly more likely to suffer from major depression and to be taking multiple medications.

“Compared with normal-weight patients, obese FM patients in our study were taking more medications for FM, including SSRIs, other antidepressants, and antipsychotic drugs, as well as gabapentinoids (Lyrica and Neurontin), all known to potentially cause weight gain,” the researchers found.

Interestingly, overweight and obese patients were also more likely to have a history of physical and sexual abuse than normal weight FM patients (48% vs. 34%).

The authors recommend that physicians treating overweight FM patients advise them to lose weight and exercise more.

Should Patients Learn to Live with Chronic Pain?

By Pat Anson, Editor

Chronic pain patients should learn how to live with their pain and pain relief should not be the primary focus of doctors who treat them, according to two influential physicians in a commentary published in the New England Journal of Medicine.

“Is a reduction in pain intensity the right goal for the treatment of chronic pain?” ask Jane Ballantyne, MD, and Mark Sullivan, MD. "We have watched as opioids have been used with increasing frequency and in escalating doses in an attempt to drive down pain scores — all the while increasing rates of toxic drug effects, exposing vulnerable populations to risk, and failing to relieve the burden of chronic pain at the population level."

“We propose that pain intensity is not the best measure of the success of chronic-pain treatment. When pain is chronic, its intensity isn't a simple measure of something that can be easily fixed," they wrote in answer to their question.

Ballantyne is President of Physicians for Responsible Opioid Prescribing (PROP), an advocacy group that seeks to end the overprescribing of opioid pain medication. She is also a member of the “Core Expert Group” the Centers for Disease Control and Prevention (CDC) is consulting with in drafting new guidelines for opioid prescribing.

Sullivan is a professor of Psychiatry and Behavioral Sciences at the University of Washington School of Medicine, and is executive director of Collaborative Opioid Prescribing Education (COPE), a program that educates healthcare providers about safe opioid prescribing practices.

In their commentary, Ballantyne and Sullivan say it’s a mistake for doctors to treat chronic pain sufferers the same way they would treat patients who are terminally ill or have short-term acute pain. They also recommend that doctors be less reliant on pain scales, such as the Wong-Baker pain scale, to measure pain intensity.

“Reliance on pain-intensity ratings tends to result in the use of opioid treatment for patients with mental health or substance abuse problems who are least likely to benefit from opioid treatment and most likely to be harmed by it,” they wrote.

“Borrowing treatment principles from acute and end-of-life pain care, particularly a focus on pain-intensity scores, has had unfortunate and harmful consequences. The titrate-to-effect principle fails when pain is chronic, because our best chronic-pain treatments don't produce an immediate or substantial change in pain intensity.”

Instead of relying on opioids for pain relief, Ballantyne and Sullivan say chronic pain patients need “multimodal treatment” that includes physical and behavioral therapy. They also stress that patients should learn to accept pain and get on with their lives.

“Many of the interdisciplinary and multimodal treatments recommended in the National Pain Strategy use coping and acceptance strategies that primarily reduce the suffering associated with pain and only secondarily reduce pain intensity. Willingness to accept pain, and engagement in valued life activities despite pain, may reduce suffering and disability without necessarily reducing pain intensity,” they wrote.

Ballantyne is one of five PROP board members who are advising the CDC about its opioid prescribing guidelines. Those guidelines, which recommend “non-pharmacological” and non-opioid treatments for chronic pain, are scheduled to be finalized in January 2016. A draft version of the guidelines was released in September and can be found here.

In a survey of over 2,000 pain patients by Pain News Network and the Power of Pain Foundation, 9 out of 10 said more people will suffer than be helped by the guidelines. Large majorities also predicted that doctors would prescribe fewer or no opioids, there would be more suicides in the pain community, and that the guidelines will result in more addiction and overdoses, not less.

New Device Makes Back Surgery Simpler (Video)

By Pat Anson, Editor

Human trials are set to begin in Australia on a new spinal fusion device that could change the way degenerative disc disease, stenosis and other types of severe back pain are surgically treated.

Traditional spinal fusions usually involve several metal rods, plates and screws to hold vertebrae in place, while a bone graft grows around them.

“Existing methods of spinal fusion use rod or cage systems that require screws to be drilled into the spine and a painful bone graft harvested,” said Professor Bill Walsh, Director of Surgical and Orthopaedic Laboratories at the University of New South Wales (UNSW). “These systems are very costly, difficult and time consuming to implant and they also have relatively variable rates of fusion success.”

Walsh and his colleagues at UNSW have invented a device they call the Thru-Fuze, which is designed to make spinal fusions much less invasive. Only a few inches long and made of titanium, Thru-Fuze has a porous design that allows the patient's own bone to grow through it, without the need for grafting or other metallic hardware.

Bone grafting – a transplant of bone from another part of the patient’s body – often fails to achieve a complete fusion. And it can take up to a year to find out if the surgery was a success.

In laboratory testing on animals, spinal fusion with Thru-Fuze began in as little as six weeks, with bone growing on and through the device in what it's developers call a rapid “biomechanical” fixation.

This video was produced by USNW to explain how Thru-Fuze works:

SUBSCRIBE to UNSWTV : http://www.youtube.com/user/unsw?sub_confirmation=1 Thru-Fuze, a new UNSW "spine-welding" invention for the treatment of chronic back pain will be tested in world-first human clinical trials, following a $1.59m grant from the NSW Government's Medical Device Fund. Professor Bill Walsh, Thru-Fuze inventor and Director of Surgical and Orthopaedic Labs at UNSW explains how it works.

Human trials of Thru-Fuze are expected to begin at Prince of Wales Hospital in Sydney next year with funding from a $1.5 million government grant. Intellectual Ventures, a private equity company, has also provided funding and has exclusive licensing of Thru-Fuze. Patents for the device have been filed in Australia, Europe, China and the United States.

Lower back pain is the world’s leading cause of disability, according to the Global Burden of Disease Study.

Lyrica Fails in Nerve Pain Study

By Pat Anson, Editor

Lyrica was originally marketed as an anti-seizure medication for epilepsy, although that’s never stopped Pfizer from looking for new ways to have doctors prescribe its blockbuster drug -- for everything from anxiety to shingles to fibromyalgia.

But efforts to get Lyrica approved as a treatment for post-traumatic nerve pain appear to have reached a dead end. Pfizer says a Phase III clinical study found that pregabalin – the generic name for Lyrica – worked no better than a placebo in controlling chronic nerve pain caused by traumatic accidents or surgery.

“The study did not meet its primary efficacy endpoint,” Pfizer said in a brief statement about its 15-week, double-blind, placebo-controlled study

There is no treatment currently approved by the Food and Drug Administration for post-traumatic neuropathic pain.

Lyrica is currently approved for use in over 130 countries. The FDA has approved Lyrica to treat chronic nerve pain caused by diabetes, fibromyalgia, epilepsy, spinal cord injury and post-herpetic neuralgia caused by shingles. The drug is also prescribed “off label” to treat a variety of other conditions, including lumbar spinal stenosis, the most common type of lower back pain in older adults.

According to ClinicalTrials.gov, dozens of new studies are underway to test the effectiveness of pregabalin on conditions such as muscle cramps, coughs, irritable bowel syndrome, scoliosis, addiction, and phantom limb pain.

Lyrica is Pfizer’s top selling drug with annual worldwide sales of over $5 billion. Earlier this year, the company agreed to pay $400 million to settle a shareholder lawsuit over allegations it marketed Lyrica and several other drugs off-label. The lawsuit stemmed from a $2.3 billion settlement with the federal government in 2009 for fraudulent marketing and illegal kickbacks paid to doctors who prescribed Lyrica and other Pfizer products.

Common side effects of Lyrica are dizziness, blurred vision, nausea, headache, weight gain and fatigue. Pfizer says Lyrica may also cause suicidal thoughts in about 1 in 500 patients who use it. The company also advises patients not stop taking Lyrica without talking to their doctor. Suddenly stopping the medication may result in withdrawal symptoms such as headaches, nausea, diarrhea, trouble sleeping, increased sweating, and anxiety.

Pfizer Expands Financial Aid to Patients

Pfizer recently announced it was expanding its financial assistance to patients by doubling the allowable income level for people to receive medications without a copayment.

Under Pfizer's RxPathways program, the company will cover copayments for Lyrica and 43 other medicines for both uninsured and underinsured patients earning up to four times the federal poverty level. The new limits are $47,080 annually for a single person and $97,000 for a family of four.

The RxPathways program helped about 350,000 patients last year, and Pfizer expects more this year because of the soaring cost of many drugs.

For more information about financial aid and discounts offered by other drugmakers, see our Patient Resources section.
 

My Life is Not My Own

By Michell Freeman, Guest Columnist

A little over two years ago I was in an automobile accident that involved a fatality. I was hit by a car that ran a red light.

I was unable to walk without great pain. When I arrived at the hospital, my legs felt very cold and I had lost feeling in my saddle area and later down my left leg. The doctor came in and told my family that I had a sequestered disc fragment in my spine.

The doctor told my husband that I was to lie flat on my back and only to get up to use the restroom. If I lost control of my bowel or bladder, I was to call 911. I was released the same day with a follow up appointment with a neurosurgeon.

I was able to see the neurosurgeon the next day, and was instructed to take a steroid for seven days and given opiate pain medication. He wanted to get the inflammation down. About a week later, I returned to his office unable to walk. The pain had me screaming for help.

I was told that I needed to undergo an emergency laminectomy and discectomy to remove the damaged disc. On my follow up, I let my surgeon know something wasn't right. I was leaking and having sudden urges to urinate. I was also having electric sensations go down my back and legs. I was burning. I had another MRI and was told I had a lot of inflammation involving the nerve roots.

michell freeman

I was referred to a pain management doctor for a series of selective nerve root injections. On my first appointment I was nervous and was given a Valium. I laid flat face down and the nurse said that she was going to walk me through it. The doctor didn’t speak, only to say who he was.

As the procedure began, the pain was terrible. The nurse said he was about to inject Depo-Medrol steroid. I felt a shock of electricity go down my leg and I began to cry. The nurse assured me this was normal and the doctor cleaned my back and walked out the room. I had no feeling in my leg and was placed in a wheelchair.

My pain was not better but increased and my head would hurt so bad I would put an ice pack on it. For a while my body ached. Two weeks later in I went for a second injection. On my third injection while on the table my doctor started the procedure and inserted the catheter. It was very painful. He moved the table up higher with the needle inserted to get a better view using fluoroscopy.

Tears were falling and the nurse said it was almost over. Just as she said that I screamed out loud as my back jerked. The pain was excruciating. The doctor finished and walked out the room without speaking.

The following summer, I went back to the neurosurgeon and he told me my pain may possibly be permanent. He said he was out of options and my primary care physician would need to take over; either helping with pain medication or a referral to another pain management specialist because I refused to get anymore injections. The neurosurgeon, imaging and pain management were all in the same complex.

Last February, I was finally diagnosed with Adhesive Arachnoiditis. I had sent my MRI scans to be reviewed, and the scan taken two months after my surgery confirmed that the Arachnoiditis had already advanced to the adhesive stage.

I have since developed colitis, bradycardia with syncope, and fluctuating blood pressure. I no longer can go to activities with my children at home nor play the same with my four grandchildren. I break plans often due to unrelenting pain.

I have days of not being able to get out of bed. My life is no longer my own. I have lost control of deciding what I am able to do each day. I have to take opiate medications in order to have some life, relief and function. Before finding the correct dosage and keeping it as low as possible, I would constantly cry out and beg to die.

Pain altered my brain and I had thoughts of suicide daily. I lost the life I once knew as an employee with USPS, an active wife, mother, and grandmother. I now live a life of having to learn how to adapt, improvise and overcome.

Michell Freeman lives in South Carolina. She is a member of the Facebook support groups Arachnoiditis Together We Fight and Arachnoiditis Everyday.

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.