Limiting Opioids for Acute Pain Will Hurt Everyone

By Patricia Young, Guest Columnist

There is a bill in Congress that, if passed, will have a great negative impact on most people in this country. The legislation by Senators John McCain (R-AZ) and Kristen Gillibrand (D-NY) would limit your doctor’s ability to treat short term acute pain by restricting the supply of opioids to 7 days. This would be a prescription that could not be renewed.

Several states have passed or are considering similar measures to limit the initial supply of opioid medication to a week or less.

I am not sure how these senators came up with the magic number of 7 days for all types of acute pain, but this will cause much undue suffering for innocent people.

As a registered nurse who worked in hospitals and nursing homes for 32 years, I have firsthand knowledge of what happens when acute pain goes untreated. Patients who suffer from acute pain often cannot sleep and become agitated at a time when rest is imperative for healing.

There are many painful and complicated surgeries that make a blanket 7 day restriction on opioid medication absurd. Post-surgical patients often do not stay in the hospital long and the continuation of pain medicine is vital to their healing process. Gastrointestinal surgery often results in an open wound requiring constant dressing changes for weeks.

Most people will eventually be adversely affected if such a bill if passed. Pain is real and comes with most surgeries and many medical conditions.

I recently had arthroscopic hip surgery. I had not been prescribed pain medicine for over a year. At one time I was taking opiates daily, but taking them in that fashion never worked for my chronic pain issues and caused adverse reactions, such as gastroparesis and severe sleep apnea. However, I knew that I would not do well after hip surgery without some pain relief.

I told my surgeon about the adverse reactions and he gave me a prescription for Percocet to use for the first 2 weeks following surgery. I felt good that this doctor had my history and I trusted him to regulate my pain medicine.

I had my surgery done as an outpatient and returned home the same day. My husband took the prescriptions signed by my surgeon to the pharmacy and returned with all of the medications, except for the Percocet. By this time I really needed some pain relief and called the pharmacy to see what happened. I was told that they were not going to fill the prescription for Percocet. They told me my Medicare Advantage Plan (Aetna) was rejecting payment for it.

This was the type of news you just do not need after a painful surgery! I immediately went from feelings of anger to hopelessness. In a couple of weeks I was going to begin 3 months of grueling physical therapy so I could walk again. I also wondered what people did for pain after more complicated surgeries which take longer to recover from. What is happening? Is the government regulating our healthcare so that an insurance company or Medicare can deny coverage for a surgeon’s prescription for post-op pain?

I explained to my pharmacy that my prescription for Percocet was for acute pain following a surgery. The pharmacy decided to look into it. I was fortunate, I was allowed this one prescription filled, but no more. The pharmacy said they would not fill another prescription for a painkiller even if prescribed by my surgeon.

I was only partially relieved now. I knew I had a painful road ahead with 3 months of physical therapy. I looked at the bottle of pain pills and thought this must last throughout my 6 month estimated recovery time. I made the decision to not take a pain pill that day. Yes, I was having a great deal of pain, but I felt I had to take them sparingly. I lost several nights of sleep due to pain because I was afraid to use my pain medicine.

By the 6th day post-op, I had only taken 3 Percocet pills and my pain level was an 8 while lying still. I called my insurance company to verify that I would get no more prescription coverage for pain medicine as the pharmacy had said. I was told different information. My insurance would allow coverage for another prescription, if my surgeon writes one, as long it was not over 180 pills for a month.

My fears about pain during physical therapy were eased and I was relieved that I could start taking my pain pills as prescribed. But why would a pharmacy tell me the wrong information?

This may be why people have to go to several pharmacies to get pain prescriptions filled. It is not because they are addicts or misusing their medication, but because pharmacies are too afraid to fill legitimate prescriptions.

Do cookie cutter rules and policies for pain treatment really promote healthcare for everyone? Or are they simplistic solutions to try and put a band aid on a problem that is completely different -- the disease of addiction?

Patricia Young lives in Florida. In a previous guest column, Patricia shared her experience about being falsely accused of having a “history of addiction.”

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.

Insufficient Evidence: How Opioid Deniers Spin Studies

By Roger Chriss, Columnist

Opioid medications are coming under fire again as being ineffective for chronic pain management.

Charles Pattavina, MD, president of the Maine Medical Association, told the Portland Press Herald that "there is no clinical indication for opioid medication for the treatment of chronic pain."

And Stanford psychiatrist Anna Lembke, MD, said in Vox that “if opioids worked long-term, I would have no problem with patients taking them.”

But sweeping generalizations like these oversimplify a complex situation. Chronic pain is a highly heterogeneous feature of a wide variety of diseases and disorders. And opioids are a broad class of pain medications that come in different doses and are administered by different routes.

Thus, a claim that opioids do not work for chronic pain is too simplistic. Medical researchers investigate carefully posed questions about specific drugs and conditions using the statistical method known as hypothesis testing.

Researchers cannot and do not investigate if “opioids” work for “chronic pain.” Good research is more narrowly focused, such as these clinical studies:

“Tapentadol extended release for the management of chronic neck pain”

“Effectiveness and Safety of Once-Daily Extended-Release Hydrocodone in Individuals Previously Receiving Immediate-Release Oxycodone for Chronic Pain”

“Oxycodone for neuropathic pain in adults”

The results are equally specific. In the first example above, the authors conclude that “our results suggest that tapentadol ER, started at 100 mg/day, is effective and well tolerated in patients with moderate-to-severe chronic neck pain, including opioid-naïve subjects.” Similarly precise statements are found in any such article.

Sometimes researchers will perform a meta-analysis or review in which they assemble a collection of existing research articles and, after a statistical analysis, attempt to draw broader conclusions. Examples include:

“Opioids for chronic noncancer pain: a meta-analysis of effectiveness and side effects”

“Opioids for chronic pain: new evidence, new strategies, safe prescribing”

“The Effectiveness and Risks of Long-Term Opioid Therapy for Chronic Pain: A Systematic Review for a National Institutes of Health Pathways to Prevention Workshop”

The last article above is often cited by opioid deniers, even though it concludes that “evidence is insufficient to determine the effectiveness of long-term opioid therapy for improving chronic pain and function.”

"Evidence is insufficient” means that no determination can be made one way or the other about opioid medications. It does not prove that opioids are ineffective for chronic pain.

This leads to the final defense of opioid deniers: Demand an impossibly high standard of evidence. Specifically, they want the “gold standard” of clinical research: a double-blind, placebo-controlled, randomized trial of a specific drug for a particular condition.

To satisfy this standard, we would have to test every opioid medication against every medical condition causing chronic pain in a variety of different groups of people. This would mean thousands of trials, each performed multiple times, before any meaningful conclusions could be drawn about opioid medications in general. The time and costs involved would be prohibitive in the extreme.

So instead we use observational data and statistical methods to derive reasonable conclusions, as found in the articles above. This approach is widely used in many areas of medical research. In pain research, it has clarified how certain opioid medications can be used to address various chronic pain conditions.

To be clear, opioid therapy can help manage a variety of forms of chronic pain. Not all pain, and not for all patients. And always under the care and guidance of medical professionals.

The goal of opioid therapy is to improve quality of life, and available evidence strongly supports that it does so.

Roger Chriss suffers from Ehlers Danlos syndrome and is a proud member of the Ehlers-Danlos Society.

Roger is a technical consultant in Washington state, where he specializes in mathematics and research.

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.

Readers Sound Off on Fibromyalgia Drugs

By Lana Barhum, Columnist

In my previous column, “Lyrica, Cymbalta and Savella: Do They Work?” I shared research studies and my own experience with the three medications approved for use in treating fibromyalgia.

Clinical studies on all three drugs don’t seem to offer enough creditable evidence that they are effective in managing fibromyalgia symptoms.  Moreover, they carry very harsh side effects, including weight gain, edema, nausea, headaches, vertigo, sleep issues, and changes in blood pressure.

My experience was similar. Lyrica, Cymbalta and Savella were ineffective for me, and had some tough and life-altering side effects.

It makes me wonder why doctors are still prescribing these medications and why the Food and Drug Administration continues to allow them to stay on the market. 

In 2012, German researchers aimed to assess the benefits and harms of Cymbalta and Savella in treating fibromyalgia.  Ten studies with over 6,000 fibromyalgia patients were reviewed. 

The results were that 22 percent of patients reported substantial relief and 21 percent had to quit treatment due to unpleasant side effects.

In reader comments on our website and Facebook page, many of you had comparable experiences:

“Tried all 3…nothing but weight gain and dizziness. No pain relief. Still haven't found anything that works.”

“I've had multiple spinal surgeries and fusions, and have severe nerve damage. And severe chronic pain. So, I've taken all three of these meds. Without success.”

I will not discount the fact that Lyrica, Cymbalta and Savella work for some people, but they appear to help only about 20 to 30 percent of patients who try them:

“I take one 60mg (of) Cymbalta a day, and it doesn't take away all the pain, but it does make it a bit more bearable.”

“I am using all three. There is relief but in moderation.”

“I have been on Lyrica since 2007 and do have relief of my Fibro pain. I am also on Cymbalta, a muscle relaxant and pain med that really (does) make a difference with my Fibro, arthritis and osteo pain.”

“Tried Savella, no good. Lyrica did not decrease pain enough to continue. I've used Cymbalta and had good results. Best results have been from using Gabapentin (Neurontin) since 1996, up to 3600 mg daily.”

“I'm back on Lyrica and Cymbalta. I know of the side effects with this medicine but it is the only option that remotely helps.”

The effectiveness of Lyrica and Cymbalta, in particular, has been hyped up with aggressive advertising by their manufacturers. And while research and patient experience show improvement on any of the medications is spotty at best, doctors continue to prescribe them.  This is yet another example where the medical field, in general, has not done a good job in treating, understanding or advocating for fibromyalgia patients.          

Side effects reported by readers to the three drugs include dizziness, mood changes, cognitive issues, swelling, sleep issues, weight gain, increased blood pressure, blackouts and more.  Many of these side effects have a detrimental effect on the daily lives of fibromyalgia sufferers – as if our lives were not difficult enough.

“Lyrica was the worst! I became a sleep-walking zombie. I was so out of it at night that I rarely made it to bed laying down. I would find myself in weird places asleep, such as with my head resting on the faucet in the bathroom sink. Or, I would sleepwalk and fall, like down the stairs. Certainly not good for helping my pain!”

“Lyrica did nothing for me. Cymbalta changed my personality completely. I became mean and hateful. When I asked the (doctor) about it, he's like, yeah that can happen.”

“I have taken Neurontin, Lyrica, Savella, and currently take Cymbalta. Neurontin gave me bad nausea, and the feeling of bugs crawling all over my body. Lyrica made me gain a lot of weight, and didn't help my pain at all. The Savella was the worst for me, it gave me very bad suicidal thoughts, so bad I had to stop taking it, it also never helped with pain.”

If only there was an ideal treatment for fibromyalgia -- one that would offer real relief from the worst symptoms and with few side effects.  But such a treatment could only come with a real understanding about the causes and symptoms of fibromyalgia, and I don’t feel medical research has gotten there yet.

The worst part of my experience with fibromyalgia is trying countless treatments to no avail. And there is nothing worse than being told, as I was, by a medical provider that if you expect real relief, you should also expect side effects and learn to cope with them. That statement shows what little understanding and empathy the medical community has about fibromyalgia, its process, and its difficulties.

I wish I had some good treatment advice to offer, but the fact is, like so many of you, I am exhausted. Years of trying medication after medication has left me weary of the medical community and the companies that manufacture fibromyalgia drugs. 

I have accepted defeat and refuse to try anything new.  Neurontin, Cymbalta, and muscle relaxers offer me some relief from nerve pain, depression, and muscle spasms, so I continue to take them.   Even so, I still live with widespread muscle and tissue pain, and a whole host of other symptoms fibromyalgia brings in its wake.

Lana Barhum is a freelance medical writer, patient advocate, legal assistant and mother. Having lived with rheumatoid arthritis and fibromyalgia since 2008, Lana uses her experiences to share expert advice on living successfully with chronic illness. She has written for several online health communities, including Alliance Health, Upwell, Mango Health, and The Mighty.

To learn more about Lana, visit her website.

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.

Is Your Medical Marijuana Safe to Use?

By Ellen Lenox Smith, Columnist

When you smoke, ingest or administer medical marijuana into your body, it is important to know that it is safe to use. Ideally, the marijuana was grown organically and is pesticide free.

Here are simple tips that might help you to determine where you stand.

Purchasing from a Private Grower:

• Be sure to check with them to see what products they use for the soil and nutrients, to be sure the plants are growing organically.
• Most growers will at some point have to face a bug infestation. Make sure they got rid of them by using an organic product. You do not want to ingest toxic substances.
• You also need to know how they work on being consistent in creating their oils, tinctures, topical ointments and edibles. It is important when you find a medication that is compatible with your body, and that you be able to purchase it again and have similar results.

Purchasing from a Marijuana Dispensary:

If you are going to a medical marijuana dispensary or compassion center to purchase cannabis, you have the right to ask those same questions.

• Do they know who their suppliers are and where the marijuana was grown?
• Do their suppliers grow organically?
• Ask how they make sure there is consistency in creating their tinctures, oils, edibles, drinks, etc.

Americans for Safe Access (ASA) has created standards for medical marijuana called Patient Focused Certification (PFC), a non-profit, peer reviewed, third party certification program for the medical cannabis industry.

PFC addresses product and safety concerns “to promote the adoption of safe and reasonable industry standards and regulations from seed to consumption.”

If you see a marijuana package carrying the PFC label, like the image to the right, it has met their standards and has been certified.

Don’t be shy. This is your life and your body. Be sure to know that whoever you purchase your medication from, that it is being grown safely for you!

Ellen Lenox Smith suffers from Ehlers Danlos syndrome and sarcoidosis. Ellen and her husband Stuart live in Rhode Island. They are co-directors for medical marijuana advocacy for the U.S. Pain Foundation and serve as board members for the Rhode Island Patient Advocacy Coalition.

For more information about medical marijuana, visit their website.

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.

Fuzzy Opioid Math and Media Theatrics

By Roger Chriss, Columnist

The Centers for Disease Control and Prevention recently produced a map that shows how prescription opioid use varies widely from state to state. Californians, for example, are prescribed opioids at about half the rate as people in Ohio and West Virginia.

The CDC also tells us that doctors “wrote 259 million prescriptions for painkillers in 2012, enough for every American adult to have a bottle of pills.”

Because an epidemic is a statistical phenomenon, defined by numbers derived from data, caution is required when presenting and interpreting such results.

The media has been anything but cautious in using these numbers as fodder for sensational anti-opioid reports.

CDC GRAPHIC

“These pills didn’t just end up in patients’ hands; they also proliferated to black markets, were shared among friends and family, landed in the hands of teens who rummaged through parents’ medicine cabinets, and so on,” Vox reported, overlooking the fact that less than one percent of legally prescribed painkillers are diverted.

Some use the prescribing numbers to make a case for extreme measures to stop opioid addiction and overdose.

“In 12 states there are more opioid prescriptions than people,” David Brooks wrote in The New York Times, before suggesting an approach to addiction treatment that sounds like it came out of Les Misérables.

“Something like half of all sufferers drop out of treatment within a few months, so it might be worth thinking about involuntary commitment,” Brooks said.

“Legally, by prescription, we have created an epidemic of death,” chimed in New Hampshire attorney Cecie Hartigan in an op/ed published by the Concord Monitor.  “What point is there in alleviating pain for people if it’s going to kill so many of them?  Except in cases of end-of-life care, opioids should not be prescribed.”

Unfortunately, a prescription is not a unit of measure, and statements like these only add to the hysteria and fuzzy math.

An “opioid prescription” is as imprecise as a “bottle of alcohol.” Obviously, a bottle may be small or large, and the alcohol it contains may be strong or weak. As a result, having a small bottle of beer with dinner would be unremarkable, but drinking a large bottle of vodka would be alarming.

This is the mistake in the CDC graphic and opioid prescription counts. A prescription is a paper or electronic document, specifying a particular drug in a particular strength given in a particular quantity -- which makes it unsuitable for statistical use. A prescription for 5 tablets of 50 mg of tramadol cannot be usefully compared with a prescription for 30 tablets of 25 mg of oxycodone.

The CDC’s fuzzy math paves the way for a lot of confusion. Media reports give dramatic percentages of people using prescription opioids, warning of dire consequences from even a few pills.

“If patients get their hands on a second dose, one out of seven will form an addiction. In the event that patients must take a long-acting opioid, about 25% will still be using the drug one year later,” Dr. Manny Alvarez wrote in the Fox News website, apparently unaware less than two percent of people prescribed opioids actually become long term users.  

National Public Radio reported that 57% of American adults in a recent poll said they had been prescribed a narcotic painkiller, and then went on to claim that “as many as 1 in 4 people who use opioid painkillers get addicted to them.”

There are 242 million adults in the U.S. population, so if 57% were prescribed opioids and one fourth of them became addicted, that would give us 34.5 million people addicted to painkillers. This is clearly not the case.

The American Society of Addiction Medicine reports that there are approximately 2 million prescription opioid addicts. These people need treatment, not media theatrics.

Moreover, 259 million prescriptions does not mean that 259 million people have a year’s supply of an opioid. In most cases, people receive a short course of a weak opioid, enough to help with acute pain after trauma or surgery.

As for long-term opioid use, the National Institutes of Health states that “an estimated 5 to 8 million Americans use opioids for long-term management.” Studies show that only a small percentage become addicted to their medication.

Surely we don’t need opioid detention centers or opioid prohibition. That would not help the people struggling with opioid addiction or people living with chronic pain disorders.

Ignore the fuzzy opioid math and related theatrics, and focus on the 2 million people struggling with opioid addiction and the 5 to 8 million people living with chronic pain conditions. They deserve our care and consideration, and certainly won’t benefit from media melodrama.

Roger Chriss suffers from Ehlers Danlos syndrome and is a proud member of the Ehlers-Danlos Society.

Roger is a technical consultant in Washington state, where he specializes in mathematics and research.

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.

Get the Facts Right About Opioids

By Barby Ingle, Columnist 

This past week Tucker Carlson aired a series of reports on Fox News about opioids and addiction. After night two of watching the “Drugged” special segments, I wondered if Fox would be willing to tell the patient side of the story and wrote to some Fox News producers I know to see if they wanted to interview me.

I didn’t know the specific producer for Carlson, but the next morning I received an email from her. I immediately responded and said yes, I would come on the show. We set it up for Thursday or Friday. Well, on Thursday we bombed Afghanistan with the “Mother of All Bombs” and they were unable to get me in.

The producer did say that they would be doing additional segments on the topic and that they are interested in bringing me on sometime in the next few weeks.

I watched the rest of the series, and on Wednesday Carlson said that 60 percent of veterans have chronic pain. That didn’t sound right to me and I wondered where Carlson got his facts from. He never said in his broadcast.

When I looked it up, I found a 2014 study in JAMA Internal Medicine that said 44% of military personnel develop chronic pain after a combat deployment. Also, not all of them are taking opioids as Carlson reported. Only 15% are taking opioids – compared to 4% in the general population.

When I get my chance to speak to Carlson or any other news outlet, I always suggest that we not take opioids off the table as a form of treatment for those with chronic pain. It is not the right thing to do in my educated opinion as a chronic pain patient. There are hundreds of treatment options, but many patients can’t afford them and insurance often won’t pay for them. You can’t leave patients without options.

Many people I know, including one of my best friends, committed suicide because of lack of proper and timely care. She wasn’t looking for opioids, she was looking for relief. She jumped from a 10-story building in New York.

Another friend spent months fighting for her medication after her insurance would no longer pay for her infusion therapy. Once her doctor finally gave her a prescription for fentanyl patches, she went home, put on all 60 patches and tried to commit suicide. She was found in time by her husband and was in a coma at a hospital for about a week.

When she awoke, she was pissed that they didn’t let her die. She wanted to die because she didn’t know how she was going to get any pain relief going forward. My friend is in an even worse situation now because the attempted suicide is on her medical record. She wants infusion therapy, but is denied it -- even though it gave her life back when she did have access to it.

I have been living with chronic pain for 20 years. This year I have been unable to find a provider who will even charge my insurance company for the infusion therapy that keeps me out of my wheelchair. I choose not to use opioids daily because they don’t work for me. But I don’t want to take them away from someone who they do help. That decision needs to be on an individual basis, between a provider and their patient.

We need to encourage pharmaceutical companies to address the addiction and tolerance in pain medications, and one way is the use of abuse deterrent formulas. Another is to get insurance companies, Medicare and workers compensation to cover alternative treatments so that we have more options. And for those who tried and failed with other treatments, we need to keep opioid medication available.

Patients also need to be responsible for their own actions and choices. Recently my doctor gave me a new script. Before filling it, I went home, Googled it, and saw the medication has potential negative side effects. I will be talking with my provider again in a week and will let him know that the medication is not right for me.

Patients need to be proactive about reading medication labels and inserts, and looking up information on our treatment options. We must educate ourselves and we must ask our providers questions. Being a responsible patient will lower the risk of abuse, and increase our access to proper and timely care.

Addicts are going to abuse no matter what is available. We chronic pain patients are simply asking for a seat at the table. Instead we are portrayed as wrong doers, who just want to get high on pain pills.

Carlson ended his week long series by saying he will continue to bring different voices and information to his viewers. His producer personally echoed that sentiment to me. I hope to be given the chance soon to come on his program and tell the patient side of the story, and the many challenges we face getting proper and timely pain care.  

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

More information about Barby can be found at her website.

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.

Why Pain Patients Should Worry About Chris Christie

(Editor’s Note: Last month President Donald Trump named New Jersey Gov. Chris Christie as chair of a new commission that will study and draft a national strategy to combat opioid addiction..

Gov. Christie has been a prominent supporter of addiction treatment and anti-abuse efforts.

He also recently signed legislation to limit initial opioid prescriptions in New Jersey to five days, a law that takes effect next month.)

white house photo

By Alessio Ventura, Guest Columnist

Unfortunately, Chris Christie's crackdown on opioids will have extremely negative consequences for people with acute and chronic pain in New Jersey. It is equivalent to gun control, where because of crime and mass shootings, innocent gun owners are punished.

The fact is that only a small percentage of opioid deaths are from legitimate prescriptions. Most overdose deaths are from illegal drugs or the non-medical use of opioids.

The government crackdown on opioids has created a literal hell on earth for people with severe pain, who often can no longer find the medication they need. This has become a major issue, even though there are other drugs that are just as dangerous when misused:

• Every year 88,000 people die from alcohol poisoning. There is no government war on alcohol.
• Every year over 40,000 people die from antidepressants. There is no government war on antidepressants.
• Every year 15,000 people die from non-steroidal anti-inflammatory drugs (NSAIDs) and 100,000 are hospitalized. There is no government war on NSAIDs.

Deaths from alcohol, antidepressants and NSAIDs far exceed deaths from opioids, yet it is opioid medication that gets all of the attention.

So when we see Chris Christie leading a new opioid commission, we chronic pain patients know full well that this just means more restrictions for us. Addicts and criminals will continue to support their habit through the illegal market, and pain patients will continue to live a life of hell that will only get worse. Most of us don’t go to the black market to buy pain medication. We drive around in excruciating pain looking for a pharmacy that can fill our prescriptions.

We also cringe in fear every time we see the "opioid epidemic" headlines and the new initiatives to combat overdoses, because we know that we will pay the price, not the addict or criminal.  It’s like when a nut case opens fire and kills people. Gun owners know that new restrictions will impact them, not the criminals.

New Jersey’s 5-Day Limit on Opioids

Gov. Christie recently pushed for and convinced the New Jersey legislature to pass very restrictive pain medicine laws. Physicians in New Jersey were very much opposed to Christie's model, but it was forced upon them anyway. Since I am originally from New Jersey and most of my family still lives there, I know firsthand the devastating consequences these restrictions could have on family members.

I have had 18 invasive surgeries since 2008 and recently suffered from a sepsis infection after shoulder replacement surgery. The infection required 3 additional surgeries, two of which were emergency surgeries as the infection spread. I was fed broad spectrum antibiotics intravenously 3 times per day.

I also suffer from chronic pain from arthritis. I have tried every other pain treatment modality, and opioid-based pain medicine is the only one that works for me.

There is no way I would have been able to get up after a 5 days to visit my doctor just to refill pain medicine. But if New Jersey’s law were instituted in Florida, where I now live, it would require me to do just that. After the surgery, I was dealing with horrible pain in my shoulder, along with severe fatigue and other complications. Thank God that Florida law still allows for prescriptions of pain medicine beyond 5 days.

Chris Christie is now leading a study for President Trump, and my fear is that a new executive order will be forthcoming which will force the New Jersey model of restricting pain medicine across every state, including Florida.

Let me relay to you a recent experience of my 85 year old mother, who had invasive back surgery in New Jersey. They sent her home after 2 days in the hospital with a prescription for a 5 day supply of Percocet, and strict orders to "NOT MOVE FROM BED.”

There is already a shortage of pain medicine in New Jersey pharmacies. My sister took the script, started at a pharmacy in Bridgewater, and worked her way on Route 22 toward Newark. She visited 30 pharmacies along the way and was unable to find the medicine. She called me in tears because my mother was in terrible pain.

My sister even took my mother to the ER, but they would not give her any medicine for pain.

Thankfully, after asking several friends for help, my sister received a call from her best friend, who found a pharmacy that had Percocet. My mother received significant relief from the pain medicine, but 5 days was not nearly enough. My sister lives with my mother and was able to take her on the 4th day to see the doctor about a refill, but she never should have gotten out of bed. She was under strict orders to stay in bed, use a bed pan and not to get up until two weeks after the surgery.

Yet now on the 4th day she had no choice because of her pain. The patient has to be present to receive a new script for opioids in New Jersey, so my sister could not visit the doctor's office to pick up a script for her without my mother's presence.

This is an unbelievable intrusion into the doctor-patient relationship. Why is it that politicians are so hell bent on government intrusion when it comes to legitimate use of medicines? This is insanity.

It is time for a full court press in Washington DC. If you have acute, chronic or intractable pain, then you better wake up and do something to preserve your rights. Chronic pain is a disease, and for people who have tried all modalities and found that opioids are the only solution, you are about to lose access to the medicine that gives you some semblance of a normal life. I anticipate that an executive order mirroring the misguided New Jersey restrictions will be issued by President Trump, in essence trampling on your ability to obtain pain relief.

I am imploring you to make our voices heard. We should not be further punished because of people with addiction illness. Of course they need to be helped, but restricting access for law abiding, non-addicted patients is an outrage. It is already difficult enough to get pain medicine in Florida, often requiring visits to 20 or more pharmacies before one finds a pharmacist willing to fill a script.

I have often thought about suicide because of my pain. Many others have as well. If additional restrictions are forthcoming from Washington, then many of us will face life or death decisions. Please do not allow Chris Christie to tip the balance.

Alessio Ventura lives with chronic arthritis and post-surgical pain. He shared his experiences as a pain patient in a previous guest column. Alessio was born in Italy, came to the U.S. at age 17, and finished high school in New Jersey. He worked for Bell Laboratories for 35 years as a network and software engineer. 

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.

Wear, Tear & Care: The SpineGym

By Jennifer Kilgore, Columnist

You’ve got to hand it to SpineGym’s marketing team -- when one of your device’s signature moves is visually hilarious, you could try to hide it... or you could own it.

They decided to own it.

The video was what intrigued me many months ago. I mean, it’s incredible.

I have Google Alerts set to notify me about new medical technology, and those are the types of emails sent to me by crowdfunding websites like Kickstarter and IndieGogo. The SpineGym device, which is designed to develop your back and abdominal muscles, was 928% funded nearly a year ago.

My core has as much strength as a trash bag filled with mashed potatoes. I’ve been desperate for something to help me focus on those important muscles, but I was concerned that it would be too intense for my spine at T-11 and T-12, as a facet joint in that area never healed correctly.

Upon watching the exercise video, however, it didn’t seem too physically strenuous. I reached out to SpineGym USA to ask for a test unit, and they were gracious enough to offer me one. I’ve been using the device for a couple months now. Each session is intended to be less than five minutes, a few times a week.

Surprisingly, that’s all I can physically manage.

What is the SpineGym?

The SpineGym has two parallel poles set into a floorplate that go back and forth. There is a black band between the poles that you lean back or forward on. There are also loops on the base plate where you can hook plastic bands as an alternative workout for your arms.

The machine bases a workout’s pace on the user’s strength and capabilities, because the force working against the machine is what sets the tone. The moves themselves range from simple isometrics to a variation of crunches that work the abdominal and back stabilizer muscles.

With the positioning of the machine’s arms, it changes the moves entirely. I felt my muscles in a way I never had on a yoga mat, and they engaged from my low back all the way up to the base of my neck. When you watch the video it doesn’t look hard, but it’s surprisingly difficult when you actually try it.

SPINEGYM PHOTO

I wondered if this was because I have absolutely no core strength, so I asked my husband to try it. Here are a few key demographic differences between the two of us: He’s 6’, an ultra-marathon runner and exercises for approximately three hours a day. (Yes, I am aware of the irony.) He did agree with my assessment, however, and said that the SpineGym engaged his midsection in a way that crunches definitely do not.

SpineGym’s Data

When 20 sedentary workers aged 35-60 were given SpineGyms to use for two weeks, they were instructed to exercise for only five minutes a day. The following results were based on EMG measurements after two weeks:

• an average 80% improvement in activation of back muscles
• an average 141% improvement in activation of abdominal muscles
• significant postural improvements
• significant improvements in abdominal muscle strength
• approximately 90% of users found the training method to be efficient or very efficient.

A second test was performed on users aged 70-90 and included three SpineGym sessions a week for two months. Each session lasted four to five minutes.

• Standing balance improvement of 74%
• Muscle strength and coordination: improvement of 58%
• Walking speed improvement of 41%

Most of this improvement was reached by participants already after the first month of exercise.

How It Worked for Me

My lower back has been hurting much more recently in that “coming-back-from-the-dead” way. If I overdo it with the SpineGym -- meaning if I use it more often than once every few days -- I go into spasm and have a flare. This is when a session lasts about five minutes. It targets that specific area that needs the most work, so I am very excited about this unit.

People larger than 6’ might find it a bit flimsy for their size, as the poles are quite tall, set into a base plate that fits your shoes side by side, and is made of carbon fiber. It’s a bit of a balancing act. However, as long as your feet are firmly planted and your core is engaged, the platform should not move. Plus, there’s an anti-slip pad underneath.

The other great things? It’s relatively small and light for medical equipment (11.2 pounds or 5.1 kg). It sets up and breaks down easily and stores flat in a T-shirt-shaped bag, though I don’t ever put it away. It doesn’t take up much space, so why bother?

When I’ve been working all day and desperately need to stretch my lower and mid back, the SpineGym hits the muscles that need releasing the most. The unit targets the discomfort better than an upward-facing dog pose on the yoga mat. I just have to remind myself not to use the SpineGym too often, or I’ll be my own worst enemy in terms of progress.

You can purchase the SpineGym for $198 through Indiegogo.

Jennifer Kain Kilgore is an attorney editor for both Enjuris.com and the Association of International Law Firm Networks. 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.

What Parenting With Chronic Pain is Like

By Lana Barhum, Columnist

I am a parent with chronic pain.

The reality of those words strikes a nerve. Living with rheumatoid arthritis (RA) and fibromyalgia can often be debilitating and draining.  The pain makes it hard to stand for long periods of time, be active, and spend quality time with my children. Sometimes, something as simple as cooking dinner takes everything I’ve got. 

It has been a long week, and at the moment I am struggling with low energy levels and pain so bad that I can barely stand. Dinner was delivered, as it seems to be most nights lately.  And I’m frustrated because there is overwhelming research that is not in favor of parents like me.

Most studies about parents with chronic pain suggest their children are adversely affected, including one published in the Journal of Child and Adolescent Psychiatric Nursing. That study was painful to read, because it found that children whose parents live with chronic pain are more likely to have adjustment and behavioral problems.

They’re also more likely to have pain complaints of their own. A 2013 study in JAMA Pediatrics looked at 8,200 teens and found that those who had parents with chronic pain were at a greater risk of having chronic pain themselves.

The researchers do not know, however, if it is caused by genetics, learned behavior, sympathy or other factors. Whatever the reason, these children experience actual physical pain.

Another study, this one from the Journal of Nursing Scholarship, finds adolescents who grow up with parents who struggle with pain generally see their parents as physically and emotionally uninvolved, and more likely to be angry, irritable and unpredictable. As a result, the children hid their true feelings or needs from their parents for fear of stressing them or causing them more pain. Some blamed themselves for their parents’ suffering. Others turned to substance abuse.

Studies like these break my heart.  It is not my kids’ fault that I hurt. And they shouldn’t have to miss out on life because I am in too much pain to handle the simplest activities. It scares me that they may not speak up or have their needs met because of my struggles with pain.

Chronic pain also affects how I parent. The research in this area disappoints me, mostly because I think it is true for me. A 2006 study in the Journal of Pain compared mothers with chronic pain to mothers without pain. The mothers living with pain reported they were more lax in their parenting and had a reduced relationship quality with their children.

Our pain also effects are children emotionally, whether they speak up about it or not. A 2012 study published in the journal Pain found that teenagers, especially girls, whose parents were in pain were more likely to experience anxiety and depression.  Teenage girls were also at a greater risk for behavior problems in school if their mothers were pain.

Doing the Best I Can

Chronic pain is a torture I don’t deserve and there are days where I feel sorry for myself.  I was 32 when I was diagnosed and here I am, nine years later, with a purse full of pills. It hasn’t gotten better and I only see it getting worse.  My marriage ended because this was too much for my ex-husband. None of this is fair to my kids who have lost the most from my battle with RA and fibromyalgia pain.

Most days, I talk myself into sucking it up.  I look in the mirror tell myself while it was my choice to have children, it wasn’t their choice to have a mother who lives with pain.  So, I am taking my kids out for quality family time even if I have to limp around and pay for it later.  I will be the mother they deserve, even if it is for one day.

I know I shouldn’t compare myself to other parents because I am in no way like them, but I do. There are days where I can actually be Supermom. On a good day, I work my 9 to 5 job, come home, make a home-cooked meal, help with homework and even clean up my modest home before I go to bed. But when my head hits the pillow, my body has had it.  I know other parents can do this stuff every day without pain and extreme fatigue, and while that upsets me, I still choose to feel a sense of accomplishment. 

The studies about parents with chronic pain don’t seem to be in my favor, but I did find one that gave me hope.  A 2008 study published in the journal Qualitative Health Research found that when a mother has chronic pain her children actually develop life skills early on and are more successful in adverse situations. That was just what I needed to hear.

After all, I see my kids turning out just fine. Despite all of my worst fears, my boys – ages 8 and 17 – are turning out to be kind, caring, smart and responsible human beings, and I couldn’t be prouder.  I am also grateful they see me as a mother who, despite chronic pain, can still love them, be there for them, and who shows them daily that anything is possible even in the most adverse situations.

Lana Barhum is a freelance medical writer, patient advocate, legal assistant and mother. Having lived with rheumatoid arthritis and fibromyalgia since 2008, Lana uses her experiences to share expert advice on living successfully with chronic illness. She has written for several online health communities, including Alliance Health, Upwell, Mango Health, and The Mighty.

To learn more about Lana, visit her website.

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.

Do You Really Want to Know Your Genetic Traits?

By Barby Ingle, Columnist  

A few months ago, I got a DNA saliva test done through Ancestry.com for $99. I was a surprised at the results both my husband and I received.

We were both told stories by our parents and grandparents about our heritage that could not be true based on our DNA results. We were a little shocked that so many relatives could be so wrong about our heritage.

Then I started to wonder how much it would cost to look at my genetic health traits and found a site that builds a personal health profile based on the DNA genotypes identified in the saliva test.

The second test at Promethease.com was only $5. I thought I wanted to know the results. How good or bad could they be from what I already knew? I am almost 45, have a lot of health issues, and by this age I should know what it is going to tell me. Or so I thought.  

Most of the DNA findings in tests by Ancestry and 23andMe have no meaningful impact on your health. Promethease is great for this reason -- it is a cost-effective way to see if there is anything additional that really warrants discussion with a doctor or genetic specialist.

Since I did a saliva test, there were about 2,000 points of interest that could be run on me. If I had completed a blood test, they could have run over 12,000. I settled for 2,000 and uploaded my Ancestry test data to Promethease.

When I got the results, it was recommended that I sort them by "magnitude." Anything rated as 4 or higher might be worth looking into. I thought -- given my poor health history -- that I would have more magnitude 4 results than my husband.

It turns out I had 271 and he had 237 “bad” genome finds. So either I am not as sick as him or he is just better at sucking it up. Although some of his genomes are considered bad, they are not affecting his health. One makes him prone to balding. Well, we already knew that.  

We knew a lot of other health traits they identified. A few that I found fascinating were my learning disabilities, impaired motor skills learning, dyslexia and poor reading performance, and multiple autoimmune disorders.

If it can pick up the traits I already knew about myself, then I better pay attention to what I didn’t know:  

• 1.4 times increased risk for heart disease; increased LDL cholesterol
• 1.7x increased risk of melanoma; increased risk of squamous cell carcinoma
• 2.7x increased risk for age related macular degeneration
• 3x increased risk for Alzheimer's
• Altered drug metabolism and bioavailability
• Increased risk for type-2 diabetes
• Moderately increased risk for certain cancers (breast, skin, lung, thyroid)
• susceptibility to Crohn's disease

There were also some genetic traits relating to medication. I am a slow metabolizer of dichloroacetate (a cancer drug) and I have a Coumadin resistance. I am a slow metabolizer of protein and have multiple slow metabolism issues. I am 7 times less likely to respond to certain antidepressants and have a higher likelihood of favorable postmenopausal hormone therapy.

My results also show that I have an increased risk of exercise induced ischemia. I found that out the hard way after exercising last fall and landing in the hospital. It also showed an increase risk of arthritis. I already knew that, but it is good to know it’s because of my DNA and not necessarily just from all my years as an athlete and cheerleader.

I also have an increased risk for gluten intolerance and for autoimmune disorders such as celiac disease. 

My husband found out that he is not able to get the full benefits of caffeine. No wonder he can drink so much coffee. 

It was interesting to find out that I have stronger cravings for alcohol. If I was an alcoholic, naltrexone treatment would be 2 times more successful with my DNA. Luckily for me I don’t drink.

Another interesting finding was that I am not susceptible to the placebo effect. I think that is really the best part of what I learned.  

There are some things that I would like to unlearn about myself, but overall this was a positive experience. There is still so much more to dive into with my test results and I am sure I will focus on some other areas down the line. I am also excited to talk to my providers about the results so that we can make better plans and follow up on any items that need attention.  

If you take a genetic test and something stands out, I recommend being very specific if you reach out to a genetic specialist for further clarification. Instead of just saying you took an ancestry test and need help understanding it, I was told to ask, "It looks like I might be a carrier for Disease X, can I come in to talk about it and get this confirmed?"

My results kept me glued to the computer for a few days. Once you see them they can’t be unseen. Would you want to see your test results?

Barby Ingle lives with reflex sympathetic dystrophy (RSD), migralepsy and endometriosis. She is a chronic pain educator, patient advocate, motivational speaker, best-selling author and president of the International Pain Foundation (iPain).

More information about Barby can be found by clicking here.

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. 

The Rest of the Opioid Story

By Roger Chriss, Columnist

Media reports about the opioid crisis in the U.S. are often grim and sensational.

The Economist declares that “states are losing the battle against deadly drugs like heroin and fentanyl.” Vox describes the opioid epidemic as “America’s worst drug crisis ever.” And CBS News warns that “opioid dependence can start within just a few days.”

But all this ignores a key point: Opioids are the best pain reliever we have, and they relieve a lot of pain.

The Institute of Medicine estimates that 100 million Americans will be in chronic pain at some point in their lives. Associated Press reporter Matthew Perrone laughed at this number in an interview that recently appeared in The Huffington Post, saying “That’s a damn lot of pain.” And Anna Lembke suggested the number may be much lower in her book, Drug Dealer, MD.

Let Perrone have his little laugh and assume Lembke is right. Perhaps there are only 25 million people in chronic pain. That’s still a lot of people -- the population of many nations in the world. It’s a population that also includes some of the worst diagnoses imaginable. They include diseases and disorders that rarely get better and often get worse, requiring the patient to live for years or even decades in pain.

These journalists and authors may not realize what this pain represents. This is the pain that lands you in the emergency room only if someone else takes you there. You are simply not capable of getting there on your own.

This is the pain that keeps you awake for days at a stretch because the brain simply cannot disengage. This is the pain that ends careers, shatters families and destroys relationships. It is not an achy muscle or a tender joint. Chronic pain is to ordinary pain as a hurricane is to a rain shower.

Opioids make a huge difference in the life of such people. According to The Washington Post, “the vast majority of those who have used strong painkillers for a long period say they work.” Lembke may trivialize multiple sclerosis or complex regional pain syndrome in her book, but people with these and other disorders deserve the best modern medicine has to offer. For pain management, that is often opioid medication.

Moreover, opioids are essential to modern healthcare, a reality often ignored by journalists.  Trauma and battlefield injuries could not be managed without the analgesic effects of opioids. The same is true for tens of thousands of cancer surgeries, organ transplants and hip replacements. And for the neuropathic pain caused by chemotherapy or the pain of a sickle-cell crisis. The list goes on and on. Opioids are an invaluable medical resource.

Of course, they must be used wisely. Developing a safer opioid would be wonderful, but this has proven difficult. Clearly not Purdue Pharma with OxyContin, which contributed greatly to the current opioid crisis before it was reformulated into a pill that is harder to abuse. Endo’s Opana ER is under review by the FDA and may be removed from the market for safety reasons.

Nektar Therapeutics has a new opioid called NKTR-181 that is showing promise in clinical trials. But it remains to be seen if it will come to market or if it will actually be any safer. Non-opioids like NSAIDs and Lyrica also have their own non-trivial risks.

In other words, drug development is hard. And despite enthusiastic media coverage of new drugs, often labeled as promising alternatives for “deadly opioids,” we shouldn’t expect a medication with no risk of abuse or addiction to appear any time soon, assuming that is even possible. And none of this matters if you are facing a major surgery, chemotherapy, or life with a chronic medical disorder right now.

Opioid medications are already here. They work. Their risks have been amply described in the media with phrases like “highly addictive opioid” or “dangerous opioid,” but never with modifiers like “life-saving” or “function-preserving.”

Few people doubt the need for careful opioid prescribing, the importance of prescription drug monitoring programs, and the value of shutting down pill mills, but too many are ignoring the medical importance of opioids. 

Everyone recognizes the tragedy of overdose deaths. Nothing can express the significance of the loss of a family member or friend to addiction and overdose. But let’s also not understate the importance of preserving life, of restoring function, and minimizing suffering. In other words, let’s prevent both tragedies. Let opioid medications do what they can do, and make sure they do that and nothing else.

Roger Chriss suffers from Ehlers Danlos syndrome and is a proud member of the Ehlers-Danlos Society.

Roger is a technical consultant in Washington state, where he specializes in mathematics and research.

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.

What Rights Do Pain Patients Have?

By Carol Levy, Columnist

Too often when I read comments posted to articles about the “opioid epidemic” or the CDC opioid guidelines, someone will write that “we need to bring a class action lawsuit.”

I am always perplexed by this.

Many of us feel we have the right to treatment for our pain, including the right to opioids.

But the only potential idea under which this might be considered a “right” (disclaimer: I am not an attorney) is in the Declaration of Independence: “We hold these truths to be self-evident, that all men... are endowed by their Creator with certain unalienable Rights, that among these are Life, Liberty and the pursuit of Happiness.”

Most of us do not have pain from a terminal condition. That takes care of the right to life. Many of us are imprisoned by our pain, but that is not the liberty the founders meant. The only one potentially relevant is the right to happiness.

What a great thought:  We are entitled to be happy. But are we? No. Those rights are not codified in law. They are a statement of belief.

How about the Patient’s Bill of Rights? It too is not a legally binding document.

It does not specifically include the right to pain management, only a right to treatment with “available resources and generally accepted standards,” along with the right to refuse that treatment.

Many states have specific guidelines. But as with the CDC opioid recommendations, they are merely guidelines (although often treated as rules and regulations).

Pain consumes us. More so, I think, then almost any other disease or disorder. If it is constant, we cannot put it aside. Being with friends, going out to dinner, even sleeping may not provide a scintilla of relief or distraction.

How then can it not feel like we have the right to pain relief? Why is it we cannot demand treatment, demand opioids?

Simply put, it is not the way the country or the world works.

We have the right to access health care. We have the right to say to a doctor, “Please treat my pain.” But we do not have the right to force a doctor to see us or to provide a particular treatment, such as opioids. The doctor also has a right to say, “No, I cannot help you.” or “I do not see pain patients.”

Maybe if we looked at it from a different angle, we can gain some distance.

If I have a rash, I go to a doctor. If I say, “I want you to prescribe this drug,” he doesn't have to agree. He may refer me to a dermatologist who says, “I don't treat rashes.” I can't demand that he treat me. I have to look for someone who does.

We can try and find a doctor who will agree, but there is always a chance we will not be able to find one. That does not mean our rights are being abrogated or denied. It merely means we have to work harder to find a doctor who will help us, no matter how daunting a task that may be.

It means that we have to accept the fact that we may want one form of treatment, but the doctor is not obligated to provide it.

And it means understanding that we have a right to try and find care, but not a right to demand it.

Carol Jay Levy has lived with trigeminal neuralgia, a chronic facial pain disorder, for over 30 years. She is the author of “A Pained Life, A Chronic Pain Journey.” 

Carol is the moderator of the Facebook support group “Women in Pain Awareness.” Her blog “The Pained Life” can be found here.

The 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.

Pain Documentary Producer Responds to STAT News

(Editor’s note: STAT News recently published an article about “The Painful Truth” documentary, which is currently airing on some public television stations. The article was critical of the doctor who produced the program for not disclosing that he had “significant financial ties” to the pharmaceutical industry. Dr. Lynn Webster asked STAT for an opportunity to respond to the article, but the site’s managing editor did not agree with Webster’s contention that the article was unfair and that it misrepresented his documentary. Below is the rebuttal column Webster sent to STAT.)  

By Lynn Webster, MD, Guest Columnist

In STAT News, David Armstrong's article on March 24, "TV documentary on pain treatment funded by doctor with industry ties," misrepresented the purpose of the film, ignored several of my detailed answers to his questions, and unfairly criticized my professional associations.

Armstrong suggested that the TV documentary downplayed the role of Pharma’s contribution to the opioid problem. It didn’t, nor did it advocate for the use of any drugs, including opioids, because that was not the purpose of the film.

Rather, it focused on the lack of compassion and treatment for people in pain, and it shed light on the largest public health problem in America: chronic pain.

The STAT News article states, “Also criticized is the Centers for Disease Control and Prevention, which last year issued voluntary guidelines that advise doctors that the use of non-opioid treatment is preferred for chronic pain.” Yes, the CDC is criticized in the documentary, but not because it recommends non-opioid treatments. It's criticized because the CDC guidelines have caused many patients to lose access to pain management.

The article inaccurately states that I want opioids to be “the rule” of pain management.  I never said any such thing. As I told Armstrong, I consider opioids to be imperfect analgesics, at best, and I emphasized how critical it is that we develop and research drugs and treatments that will eliminate the need for opioids. I also explained that our current opioid crisis is largely due to lack of insurance coverage for alternatives to opioids.

The documentary clearly advocates for a multi-discipline treatment and favorably shows a clinic where patients get such treatment including bio-feedback, and occupational therapy. It also chronicles the story of NFL football player, Hal Garner, whose life was destroyed by opioids. Given this, it is hard to see how one could conclude the film advocates for opioid therapy.

Armstrong seemed to be most concerned that my professional work with the pharmaceutical industry had somehow influenced the messages in the show. In reality, my wife and I committed to funding the documentary ourselves. We accepted no corporate sponsorship because we wanted the freedom to share the truth of these stories from the patients' point of view, and not from the perspective of pharma, regulators, or insurance.

Publishing the amount of money associated with my research misleads readers into thinking I personally received those funds. I did not. The research dollars received from Pharma were grants for clinical studies conducted by the research company where I was employed. The government requires the funds to be reported under my name since I was the principal investigator for the studies, but I am not a personal recipient of these grants. I clearly explained that to Armstrong when he asked me about those specific funds.

I am currently working with several pharmaceutical companies with the potential to develop game-changing innovations. We are making headway in creating pain medicines that will be as powerful as opioids but will have almost no addiction potential and/or risk of overdose. We need Pharma’s involvement for these advances to occur, and that is why I work with them. I'm deeply grateful that I have the training and experience to contribute something of value to society. My ability to conduct comprehensive medical research enables me to help the community of people living with pain as well as those living with addiction.

Armstrong’s article, filled with criticism as it is, ironically shows why it was important to produce the documentary. It illustrates how opioids are such a volatile topic that anyone associated with them - whether it's a researcher, Pharma, or patients with pain - are subject to censure, antipathy, and bias.

The film attempted to give people in pain a voice. The painful truth is that they have been voiceless and continue to be victims in a broken healthcare system.

Lynn Webster, MD, is vice president of scientific affairs at PRA Health Sciences and a former President of the American Academy of Pain Medicine. He is the author of the award-winning book, “The Painful Truth” and co-producer of the documentary of the same name.

You can follow Dr. Webster on his blog, and on Twitter @LynnRWebsterMD, Facebook and LinkedIn.

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.

Living with Intractable Pain

By Lynette Shier, Guest Columnist

I am a true intractable pain sufferer. I got my condition over 30 years ago when a drunk driver in a van slammed into me while I was riding on the back of a motorcycle. I was 18 years old.

I should have died in that crash, but survived. At first, I was convinced it was a miracle and a blessing. I feel entirely different about it now, as the CDC opioid guidelines have led to many of us losing the only form of pain relief that works.

Unlike chronic pain, which can be a pain that lasts more than 3 months, people who have Intractable Pain Disease have a constant debilitating pain that doesn't go away. There is no surgery, procedure or medication that cures intractable pain. This type of pain is often unacknowledged, allowing it to go untreated or under-treated

I have contacted my state medical board and went to a public meeting to see if exemptions can be made for those of us who suffer from intractable pain. I also contacted the CDC to bring attention to this issue, only to be told I should see my doctor.  

My condition goes beyond anything a human being should be able to live with. I had multiple injuries in that crash, including my left leg being torn to shreds and amputated at the scene. I also lost two inches of femur (thigh) bone, shortening the stump that is left.

My pelvis had what doctors call a "vertical shear fracture” – it was completely broken from top to bottom, and essentially split in half. The surgeon said my left hand was crushed into "a million pieces." My arm was broken just below my shoulder joint.

LYNETTE SHIER

I lost three-quarters of the blood in my body and was well on my way to the other side, but they flew me to a trauma center and performed 15 hours of emergency surgery, along with blood transfusions. They drilled holes into my hips, placed large pins into them, and then strapped me into a vice that pushed my pelvis back together until the fracture healed.  

I was in the hospital for 3 months and in physical therapy for years. I have lived with intractable pain ever since, raising children and working at jobs that even a healthy person would say are physically challenging. I couldn’t have done it without pain medication.

My body eventually began to give way to other complications. I now have bursitis, tendinitis, arthritis, neuropathy, degenerative disc disease, scoliosis, and root nerve impingement. My body is so crooked that I cannot walk correctly. I had to quit working in 2009.

After all these years of taking pain medication for my increasingly degenerating conditions, I need much higher doses than your average person can take or a physician would normally prescribe. This has caused me to be in a constant state of torturous pain and agony.

I have considered ending my life merely to end the pain a few times, but I cannot do that, as I am a fighter and will not give up that way.  

This is a travesty, and no human being should feel they need to do that to end their suffering when it can be prevented with proper treatment with pain medication.

If a patient commits suicide to free themselves from intractable pain, that should be considered a criminal act by the doctors who deprived them of medication and those who make the rules and guidelines at the CDC and the DEA. It is murder in my eyes.

There is no reason they can give me, and they have tried, that excuses the suffering they are causing people by taking away the only thing that brings them relief and makes them feel human. I'm not talking about junkies that are trying to get a fix. I'm talking about true intractable pain for which there is no shot, surgery, miracle procedure, or non-opioid medication that works, and the only thing that gives some relief is opioid medication.

No one should suffer from that kind of pain on a constant basis, and no one should be denied proper care for this condition. It is inhumane! If we had cancer or were terminally ill, they would have no problem giving us as much as we needed to keep us out of pain because its considered inhumane to allow suffering. Yet the CDC guidelines are doing just that, reducing quality of life and increasing human suffering.

They do not tell you that studies have shown that severe pain can kill you. It keeps your body in a constant state of stress, wearing down your body, organs and mind.

30 Years of Opioids Without an Overdose

The overdose statistics they keep are also not correct. A pain patient may die from a heart attack or stroke, but if they find opiates in the toxicology report they could classify it as an overdose, even when the patient has been taking opioid medication appropriately while under a doctor's care.

I have been taking pain medications for over 30 years, at doses that a normal person would probably overdose from, but I have never overdosed in my life. I am still under-dosed, as fear has taken over physicians.

This has made me housebound. I don't even want to get up and go to the bathroom, as I know it will cause me pain. It takes everything I have to get up every day, put a smile on my face, say a prayer, and do very limited things in my home. Just taking my dogs out or limping from my bedroom to the kitchen to get something to drink takes the life out of me. It's misery beyond what I would ever wish upon my worst enemy.

They worry about addiction. Well, if there is no cure for this condition and I'm to be in pain for the rest of my life and need medication for any kind of relief, what difference does it make if I'm addicted?

Someone has to do something about this, and by someone I mean ALL OF US WHO SUFFER! And all the physicians and pain specialists who know it is cruel and wrong.

I am attempting to start an intractable pain movement to bring more attention to us. Right now, there are too many different advocacy groups, websites, blogs, and videos. I see so many people out there who suffer and try to get their story out, but in so many separate places. I feel if we all came together in one place, maybe we could bring attention to this horrible situation and get things fixed.

We cannot just complain on these forums. We must show them what this is doing to us and our families. Stand with me and let’s fight for intractable pain relief. Make the CDC deal with this correctly before we all die of pain.

If you’d like to know more about living with intractable pain, please watch my video.

Lynette Shier lives in New Mexico.

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.

Lynette Shier lives in New Mexico.

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.

Why the CDC Needs to Recognize Palliative Care

By Barbara Nelson, PhD, Guest Columnist

A little over a year ago, the Centers for Disease Control and Prevention released its “Guideline for Prescribing Opioids for Chronic Pain.” Its goal is to help reduce the raging and heartbreaking overdose epidemic in the U.S.

Unexpectedly, the guideline has exposed the extraordinary need for palliative care for millions of patients who may live for decades with intractable pain. These patients now face enormous obstacles getting medically-needed opioids for effective pain control, especially when the dose exceeds the highest recommendation made in the guideline of 90 morphine milligram equivalents (MME) per day.

This unbending recommendation is too low to provide pain control that will keep many intractable pain patients out of agony.  In the last year, untold numbers of chronic pain patients requiring palliative care lost the correct opioid dose for their diseases -- making work, self-care, and family interactions harder or impossible.

I have seen this suffering, both personally and professionally.  I have an incurable and progressive neurological pain disease that, before diagnosis and some pain control, left me unable to read. My disorder profoundly changed my life as I previously knew it.

The dosage recommendations in the CDC guideline show no compassion for those with intractable pain, who will probably need higher opioid doses for the rest of their lives. Only later, when faced with terminal illness and imminent death, will official support for adequate pain control be acknowledged.

How Did We Get Here?

The objective of the guideline was to reduce opioid addiction and overdoses by limiting the dose and duration of prescriptions written by primary care doctors.

The guideline begins with support for “appropriate and compassionate” pain control for those with chronic pain.  It pays special attention to the chronic pain care needed by those fighting cancer, needing palliative care, or facing terminal illness. These three categories of pain are excluded from the CDC’s suggested highest daily opioid dosages because of their well-researched requirements for higher than average pain control, 

There is a problem to this approach, however.

The differences between these three categories are unclear to many doctors and patients. Most frequently, palliative care is confused with end-of-life or hospice care for cancer.  But palliative care is different from end-of-life care, because in palliative care there is no assumption of imminent death, nor is there a decision to withhold medication that might curtail the disease itself.

Chronic obstructive pulmonary disease (COPD), multiple sclerosis and sickle cell anemia are routinely considered diseases that can require palliative care, and these patients may live decades after their diagnoses.

The CDC guideline defines palliative care “as care that provides relief from pain and other symptoms, supports quality of life, and is focused on patients with serious advanced illness. Palliative care can begin early in the course of any serious illness that requires excellent management of pain or other distressing symptoms.”

Not all diseases requiring palliative care also require opioids.  But those patients who require both palliative care and opioids are virtually invisible in the guideline.  Invisible patients get neither appropriate nor compassionate pain care.

The Need for a Palliative Care Appendix

The CDC should produce an appendix for all prescribers – not just primary care doctors – that would help them provide fully adequate pain relief to palliative care patients with life-long pain rather than near-death pain.  

The appendix could start by examining the legislative or regulatory language used in the 13 states that define intractable pain and that allow higher than typical opioid dosing.  The appendix also needs to emphasize research on the most painful long term diseases, which will offer physicians a wider variety and more specialized array of treatment options than is available from a focus on generalized chronic pain. 

The appendix could begin with the recognition that intractable pain patients needing palliative care do not get “high” or “euphoric.” Opioids are medicines that reduce pain and let them live closer to normal lives.

Helping physicians assist patients in organizing self-directed palliative care is another necessity, because most patients will not have access to a palliative care practice, let alone to one that is appropriate for their conditions. 

For patients with rare diseases, the CDC should emphasize the role of the doctor as learner as well as expert, as he or she must take the time to become familiar with a disease they may have never seen before. 

Yes, there may be some patients who attempt to scam the palliative care approach. However, I doubt that this kind of long-term pain is easily faked. The CDC guideline itself asks physicians to make dozens of new medical judgments. Acknowledging intractable chronic pain patients who require palliative care is just one more.

If the CDC does not add a palliative care appendix to the guideline, perhaps the American Academy of Pain Medicine, the American Medical Association or the American Academy of Hospice and Palliative Medicine could convene a group of all stakeholders to thoughtfully discuss the issues of pain treatment within palliative care.  Civil rights organizations that focus on inequality, including medical inequality, could contribute to this effort. 

Groups outside the CDC could also expand the mandate beyond training primary care physicians about opioid dosages, to include pain treatment for diseases requiring palliative care.

The conflict over opioid guidelines that are treated as laws or regulations, instead of recommendations, is not going away.  Several states, insurers and federal agencies have adopted versions of the CDC guideline, and others are sure to follow.  

Providing adequate pain control to palliative care patients would not make legislators, regulators or citizens any less committed to reducing misuse of opioid prescriptions.  In fact, drawing attention to palliative care would demonstrate a welcome dose of wisdom that millions of Americans would applaud.

Without an appendix to the CDC guideline or some other booklet that promotes correct palliative pain care, how will outstanding doctors be protected from unwarranted intrusions by insurance companies and drug enforcement organizations?  How will patients who deal correctly with pain that most people can’t imagine receive the palliative care that they deserve? They won’t.

The CDC’s “one-size-fits-all” guideline is bad medicine and bad policy. It ignores millions of intractable pain patients who require higher opioid doses.  

Everyone needs to recognize the importance of palliative care. You may need it someday. And unless changes are made, you won’t get appropriate medication either.

Barbara J. Nelson, PhD, is Dean Emerita of the UCLA Luskin School of Public Affairs and is Professor Emerita of UCLA’s Public Policy Department. She is the founder of The Concord Project, which builds social capital that allows people from divided communities to work together on projects of mutual benefit.

Barbara also directed The Leadership and Diversity Project, improving policy education and policy making through creative inclusion and enacted equality.  She served on the board of the Greater Los Angeles United Way.

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.