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.

Lyrica, Cymbalta and Savella: Do They Work?

By Lana Barhum, Columnist

If you have fibromyalgia, chances are your doctor has prescribed one or more of the three drugs approved for fibromyalgia by the U.S. Food and Drug Administration (FDA).   It is also likely you have been disappointed when they didn’t work and by the side effects they caused.

I have tried Lyrica (pregabalin), Cymbalta (duloxetine) and Savella (milnacipran). My experience is they don’t work well and clinical research doesn’t offer up enough credible evidence that they do.

Patient feedback on these medications is actually more telling than recent studies.  Just check any fibromyalgia online forum and you will find your unpleasant experiences with these medications aren’t unique and shared by many.

Lyrica

Lyrica was developed by Pfizer as a treatment for epilepsy, but it is now widely prescribed for many different types of pain. Lyrica was approved by the FDA in 2007 as the first drug specifically for the treatment of fibromyalgia. Pfizer notes on its website that Lyrica “significantly relieves fibromyalgia pain and improves physical function” in fibromyalgia patients.  But does it really?

An initial study from 2005, with results published in Arthritis & Rheumatology, found Lyrica to be effective at relieving pain in only 29% of the 529 fibromyalgia patients in the study group. 

A major shortcoming of the study was that weight gain affected 10% of the study participants.

What was also interesting about the Arthritis & Rheumatology study is that a large number of participants dropped out due to Lyrica's side effects, which included edema, dry mouth, weight gain, infection, increased appetite and constipation.

A 2014 study of out of the University of Calgary, with results published in the journal Therapeutic Advances in Drug Safety,  also found that Lyrica causes edema and weight gain in some patients. 

Those side effects, especially the weight gain, aren’t worth it for a drug that doesn’t seem to work well for most people. You would get more benefit from dietary changes for fibromyalgia than with Lyrica - at least that was my experience. 

All I got from taking Lyrica was a 40 pound weight gain that took me two years to take off. I made the mistake of staying on it for too long, believing that it would one day work for me.

Cymbalta

Cymbalta was originally developed and marketed by Eli Lilly as a treatment for depression. You may even remember some of the commercials for it. In 2008, Cymbalta become the second drug approved by the FDA to treat fibromyalgia.

While Cymbalta doesn’t have stellar ratings amongst fibromyalgia patients, it does outperform Lyrica in my opinion. Initial trials, with results published in The Primary Care Companion to The Journal of Clinical Psychiatry, show that over a third (36%) of study participants reported at least a 50% reduction in pain, based on a dosage of 60 mg once or twice per day.

A report published in the journal Expert Review of Clinical Immunology found that many participants dropped out of Phase I, II, and III trials of Cymbalta due to side effects, including nausea, headache, and sleep issues. 

Cymbalta has given me some pain relief over the years, but I have also made changes to my diet and lifestyle which may have helped as well.  If Cymbalta has helped me with anything, it is managing the depressed feelings fibromyalgia often leaves in its wake.

Savella

My Savella experience was far worse than my experiences with Lyrica and Cymbalta.  I could only stay on it for two weeks because the side effects were more than I could handle. Dizziness, vertigo, nausea, fatigue, and severe headache were a few of the side effects that stood out.  And I didn’t get any fibromyalgia pain or symptom relief.

Savella was developed by Forest Laboratories specifically for fibromyalgia and was approved by the FDA in 2009.

Like Lyrica and Cymbalta, studies confirm Savella’s poor performance. One double-blind study, reported in the journal Pharmacy & Therapeutics, found that only about one in four fibromyalgia patients (26%) were getting pain relief. 

The rate of discontinuation due to Savella’s side effects and treatment failure was also high -- nearly 43 percent.

In 2010, the consumer advocacy group Public Citizen petitioned the FDA to remove Savella from the market because it increased blood pressure in patients who didn’t have high blood pressure to start with. The group also argued Savella posed an increased risk for suicidal thoughts.

The FDA responded last year and denied Public Citizen’s petition, but said it would continue to monitor the safety of Savella.

My Thoughts

The only medication that I have seen that offers real improvement is Pfizer’s Neurontin (gabapentin), which is prescribed “off label” because it is not specifically approved to treat fibromyalgia by the FDA. Neurontin has helped my nerve pain and I also take muscle relaxers as needed, as I am frequent sufferer of muscle cramps and spasms. 

Studies have confirmed Neurontin’s effectiveness in treating fibromyalgia pain and improving sleep and fatigue. One double-blind study, with results published in Arthritis & Rheumatism, found that over half (51%) of fibromyalgia patients were finding relief with Neurontin.   

That’s not bad for a medication that was originally developed to manage seizures and whose formula has been the same since 1993. While it has helped me, I certainly understand Neurontin hasn’t helped everyone. There are even reports of Neurontin being abused by addicts. 

I am not sure why the makers of Lyrica, Cymbalta and Savella continue to market medications that don’t offer most people real results.  Yet, these medications remain available and doctors are still prescribing them to treat fibromyalgia. 

Let's just hope there are new fibromyalgia drugs on the horizon that actually work and give us real and reliable symptom and pain relief.

What has been your experience with Lyrica, Cymbalta and Savella?

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.

How Doctors Can Dash Your Hopes

By Crystal Lindell, Columnist

I saw a new specialist this month. A neurosurgeon.

It didn’t go great. In fact, it sucked. He ordered some MRIs, which all came back fine, just like they always do. And then he created a treatment plan that literally included losing weight and not wearing bras.

Thanks.

He had come highly recommended by a good friend and I was hoping he would be willing to try something different for me. I wasn’t sure exactly what, but I had the vague idea that he might be able to cut my nerve. But, he said that was way too risky and wouldn’t even consider it.

Then he suggested a bunch of horrible medications that I’ve l already tried, like Lyrica and gabapentin and pain patches.

And came up with his brilliant idea of not wearing bras.

My pain had become much more manageable, but over the last three or four months it has spiked. A lot. Leaving me with too many days where I can’t get out of bed, no matter how many pain pills I take.

I had long ago given up on seeking out new specialists. Two unsuccessful trips to the Mayo Clinic, multiple university hospitals and thousands of dollars in medical bills tend to dampen even the most enthusiastic patient’s drive to find new treatments.

But the pain was coming back, and after recently increasing my opioid dose, I was reluctant to try to go up any more. And so, I figured I would just try one more guy. One more doctor. And just, see.

I forgot how completely devastating it is when you get your hopes up, only to have them crushed.

In the back of my mind, I confess I had let myself get a little hopeful. This doctor is known for being open to experimental treatments, and I thought he might be willing to try some new approaches. And I think, deep down, I was holding on to this as my last out. As the one thing out there that might still be able to help me. The one thing that I hadn’t tried yet.

But as I sat in his office, going through four years of medical records with him, explaining everything I had been through and everything I had tried, only to have him blame my bra, I remembered why I had given up on trying new doctors.

And as I sat in the MRI machine for a full hour, getting every angle and holding my breath for various shots, I remembered how awful all the medical tests can be, and how heartbreaking it is when your very real pain doesn’t show up on any scans. How hard it is to remind yourself that you’re not crazy. That you are actually sick. And it doesn’t matter what the MRI results show, your pain is real.

When I left my second appointment with him, I got in my car and cried. I cried because I felt like I was completely out of options. I cried because he honestly thought the reason I was in debilitating pain was my weight. I cried because I didn’t know what the next step was. I cried because I didn’t feel like he believed me. And I cried because I was angry at myself for letting my heart get its hopes up.

There’s a reason pain patients get mad at every well-meaning friend who has a cousin whose dog was saved with a new medication that they think you should try.

There’s a reason we all get visibly angry when someone tells us we should see the doctor that their mom’s brother’s baby saw.

Because if we don’t get mad, if we give in, we end up getting our hopes up. We start to think getting better might be a real possibility. But most of the time, our hopes are dashed, exactly as we feared they would be.

And the only thing worse than chronic pain, is having chronic pain and being hopeless.

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.

Little Evidence That Pain Contracts Work

By Roger Chriss, Columnist

Pain contracts are common. The Centers for Disease Control and Prevention recommends their use and many states all but require them. The contracts can be long, detailed and sometimes oddly demanding, as Crystal Lindell described in her recent column, "Signing a Pain Contract in the Age of Opioid Phobia."

In 2001, pain contracts and opioid use agreements were being promoted as “A Tool for Safely Treating Chronic Pain” by the American Academy of Family Physicians.

By 2011, Kaiser Health News was reporting that doctors were increasingly using contracts to protect themselves and to spell out the rules patients had to follow to reduce the risk of abuse and addiction.  

Some patients may end up signing multiple contracts with various providers, sometimes even watching video presentations about the content and intent of the contract.

So it seems reasonable to assume that pain contracts work, that research supports their use and establishes their benefits. Unfortunately, that is not the case.

The American Medical Association’s Journal of Ethics reported in 2013 that a review of opiate treatment agreements found “only weak evidence of a reduction in opiate misuse” in studies that were described as “methodologically poor.” The article also warned that “perhaps the greatest potential harm in the use of narcotics contracts is the inherent message to the patient that he or she can’t be trusted.”

Similarly, in 2010 the Annals of Internal Medicine published a review of a handful of observational studies rated as poor or fair quality, which found that opioid misuse was only modestly reduced in patients who signed contracts. In some of the studies, no benefit could be demonstrated.

In 2011, MD Magazine reported that “there is little evidence that these documents help reduce opioid misuse.” Steven King, MD, agreed with that assessment in the Psychiatric Times, writing that “there does not appear to be any firm evidence that these tools reduce the likelihood that opioids will be used in unintended ways.”

And as far back as 2002, the Clinical Journal of Pain published a study that stated “efficacy is not well established” for opioid contracts.

Thus, pain contracts have been researched for well over a decade with consistent results: they do little to reduce opioid misuse or abuse in any form.

Moreover, there is research and expert opinion suggesting that contracts can be harmful. For instance, in 2011 the Partnership for Drug-Free Kids reported that opioid contracts may damage patient trust and should not be used as a way to “fire” patients who violate the terms of the agreement.

In 2016, STAT reported on the unintended consequences of federal legislation promoting the use of such contracts, in particular how they could stigmatize and endanger patients who are struggling with substance abuse and addiction.

So why are pain contracts becoming more common and more complicated? And why is there a perception that they work?

Perhaps because chronic pain patients are in general compliant about pain medication, rarely share or sell their pills, and tend not to develop problems with abuse or addiction. In other words, pain contracts work because there is nothing for them to do.

The Johns Hopkins Arthritis Center tells us that patients who develop an opioid problem almost always have a prior history of substance abuse, and that stealing or forging prescriptions rarely occurs among patients. Another study found an opioid addiction rate of only about 3% in chronic pain patients.

Much like airport security scanners, pain contracts seem like a form of theater, a solution in search of a problem. But they are not just a benign if pointless exercise in paperwork.

Pain contracts unnecessarily lump together chronic pain patients and people suffering from drug addiction, and thus risk stigmatizing and misunderstanding two distinct groups. Chronic pain patients are not potential addicts or abusers-in-training, and substance abuse is a separate medical condition that requires a distinct approach from pain.

Perhaps there is a way to create pain contracts that actually help patients and clinicians. But until the evidence to support them is found, resources could be better used to improve treatments for chronic pain, as well as substance abuse.

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.

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.

5 Steps New Chronic Pain Patients Should Take

By Barby Ingle, Columnist

When I first experienced the symptoms of endometriosis, all I could think of was get to the doctor so this will stop. That’s what I did as a kid. I got sick and my mom took me to the doctor and made me better.

I knew something was wrong inside of me because of the blood and abdominal pain. But with endometriosis, you don’t really know for sure until the doctor looks to see what is going on.

I had never heard of endometriosis at the time of my diagnosis. Nearly 20 years later, it is no longer a rare disease with more than 200,000 new cases in the U.S. every year.  Endometriosis occurs when tissue that normally lines the inside of the uterus grows outside of it.  The disease is treatable, but it does require a medical diagnosis to rule out other possible causes of the symptoms.

I went through lab tests and imaging, but they didn’t show much. I had endometriosis cysts that had ruptured for years before the symptoms became an issue for me chronically. None of the providers ever warned me what they could mean.

When they finally did the laparoscopy, the uterus tissue was found on my ovaries, fallopian tubes, abdomen walls, and intestines. Once they did this procedure, the endometriosis got worse instead of better.

I decided to go to a larger city to get care at a major university hospital. I was the youngest patient there to ever receive a full hysterectomy after rounds of hormones and Lupron shots that didn’t work.             

1. Find the Right Doctor

What I learned from my experience with endometriosis was the importance of finding the right doctor. Each course of treatment is going to be different. Don’t always think the treatment you receive is all there is because that is all your doctor offered you.

You can make the choice to get the care you need. Don’t be afraid to do so. It’s your life. 

2. Consider Multiple Treatment Options

Don’t just go for the pain medicines or invasive treatments first. If a treatment you try does not work for you, stop and ask for something else. If your doctor can’t provide it, move on and find one who can. It is important for you to communicate with your providers, family and caretakers to create a treatment plan.

3. Take Responsibility for Your Treatment

We can’t live in our doctors’ offices between appointments. The person who is most responsible for your care is you.

It is up to you to follow the treatment plan and realize that it may take multiple and concurrent treatments to get everything under control.

4. Get Organized and Ask for Help

You may lose people in your life that don’t understand, are not supporting you or causing negativity. That is okay. It can be lonely, but we can only ask for help. The person we are asking is not obligated to help. Find people who can help willingly.

You will need to get organized, so you know what help to ask for. You may also realize the help you require needs to be split up among different people. If one person is all you can rely on, it may cause them to burnout.

Reach out to resources in your community, such as churches, community centers, high school and college volunteer programs, your insurance company resources, etc. Don’t limit yourself when it comes to getting help, and be thankful and willing to receive any help you do get from others.

I have talked about the importance before of keeping a journal to track symptoms, treatments and for your personal well-being. Once you have some data that helps you recognize your pain triggers, you can set expectations and plan accordingly. Then when pain flares pop up, you will be better able to handle them, have less stress, and better daily living.

5. Be Your Own Advocate

Finally, advocate for yourself. You will come to learn your body better than anyone on earth. You will know what you need. If insurance denies an option, appeal it. If a medication is causing you terrible side effects, report it to MedWatch at the FDA. 

Have the nerve to be heard and lose the fear of speaking up. The more you stand up for yourself and share your story, the better you and the chronic pain community will be. 

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. 

It's Time for Chronic Pain Patients to Act

By Alessio Ventura, Guest Columnist

I am a chronic pain sufferer who recently had multiple emergency surgeries due to sepsis infection after a shoulder replacement.

I have had 17 surgeries since 2008, including major back surgery, rotator cuff repair, biceps tendonitis, knee surgery and hernia surgery. Bottom line: my body is now wracked with arthritis and post-surgical pain.

I have tried several pain treatment modalities over the years, including Lyrica, Cymbalta, chiropractic, injections, NSAIDs, and acupuncture. The only effective treatment in my case has been the legitimate, professional application of opioid medicine by pain management physicians.

I have severe allergic reactions to NSAIDs, which kill 15,000 per year and send 100,000 to the hospital.  A friend of mine died from a stroke because of NSAIDs.

After my recent surgeries related to the shoulder replacement and subsequent infection, my wife had to travel to 25 different pharmacies before she finally found someone willing to fill my scripts for Oxycontin and Percocet.

This is not unusual though. Each month is a long trek to find pain medicine. What has happened due to government restrictions on opioids is a reduction in the supply of opioid medicine. The drug companies see the writing on the wall and are slowly trying to get out of the business.

ALESSIO VENTURA

At the same time, the government sets limits on how much a pharmacy can stock. That is according to pharmacists I have spoken to, but is denied by the DEA and FDA in response to letters I have written.

It truly is a nightmare. Each month, you have to go to pharmacy after pharmacy before you find a pharmacist willing to dispense the medicine, which pharmacists are under no legal obligation to provide. Many pain patients go into withdrawal each month as they search, while at the same time enduring intractable pain.

Most of us have tried every single alternative to opioids, but the anti-opioid hysteria paints a picture that there are better and safer therapies. That simply is not true. The only thing that works for many of us is an opioid-based medicine.

The madness is spreading. New Jersey governor Chris Christie has signed into law a bill that limits the first script for opioids to 5 days. After the four surgeries I’ve had since August, I was bedridden and could not visit a doctor after 5 days. They could not identify the infectious agent as they were unable to grow it in cultures. Eventually I was treated with 3 broad spectrum antibiotics, which in addition to killing the infection, also killed the "good" bacteria in my system, which caused severe fatigue and gastrointestinal side effects.

Many acute traumas, like when someone is shot or in a horrible car accident, will not provide for easy travel to visit a doctor to refill an opioid after 5 days, and it is currently illegal for a doctor to call in a script for controlled substances. This caused a run on opioid medicine in New Jersey as hospitals and surgery centers accumulated as much as they could, and with the cutback by drug companies, many people could not get their scripts filled.

My 85 year old mother in New Jersey had back surgery recently. My sister drove to 30 pharmacies -- starting in Bridgewater and working her way along Route 22 toward Newark -- and she was unable to get our mother’s scripts filled. My mother was in horrible pain and my sister had to rush her back to the ER. It was horrible. My sister broke down in tears at the ER as she explained her plight and the suffering of my mother.

There is a reason why army medics carry morphine to the battlefield. It is the only thing that has a chance to address severe acute pain.

In addition to supply limits, there is the prescription drug monitoring system. The government now tracks every single opioid that you legally acquire. If for whatever reason you find yourself away from home and cannot see your physician and you attempt to refill or get new pain medicine because of an injury, surgery or chronic pain, you will not be able to do it legally without first getting in touch with your doctor so they can coordinate care. Often this is not possible.

If you do get pain medicine while away without coordinating, you will be investigated and may be subject to arrest. Your doctor may also drop you from their practice. Your rights as a patient, especially your privacy rights and your right to seek pain relief, are now severely trampled.

Politicians are playing with fire as the opioid hysteria grows. More people will commit suicide rather than live with intractable pain, because politicians think they know more than doctors treating patients.

Who is going to listen to us? Politicians and some in the medical community conveniently conflate overdose data from the illegal use of opioids with legitimate use for intractable pain. They are also dismissive and try to tell us that we should try alternatives. For example, Lyrica is now being pushed by many, but it was developed only for a specific class of nerve pain, and possible side effects include suicide, weight gain, and a host of other things.

I almost committed suicide myself after being prescribed Lyrica and Cymbalta. I went from 190 pounds to 300 pounds, and had suicidal thoughts almost from the outset. When I told my doctors, they said, "Give it more time, the side effects will subside".

After the Lyrica and Cymbalta were stopped, I stayed on OxyContin and had bi-weekly testosterone shots. I lost all of the weight and the suicidal thoughts went away. It was a miracle.

There is a literal civil war occurring now between physicians who understand pain, and others who refuse to admit the truth about the efficacy of legitimate pain management via the use of opioids. Unless we all collectively speak up and scream loudly, meaning writing formal, respectful, but firm and forceful letters to our representatives, they will continue to step on us and cause our lives to be living hell.

It is time. Find out who your state and federal representatives are. Find out who your local, state, and federal health organization leaders are. Write formal letters, not emails or phone calls, to your representatives. After you write your letters, request meetings with your representatives and go to that meeting. Do whatever you can in a professional, respectful, but aggressive way in order to bring attention to our plight.

The time is now. Failure to act most assuredly means an end to our rights, a lifetime of pain, more illegal use of drugs, and in many cases, death.

Alessio Ventura was born in Italy, came to the U.S. at 17, and finished high school in Newark, New Jersey. He worked for Bell Laboratories for 35 years as a network and software engineer. Alessio has been married for 35 years and has 4 adult children, including triplets.

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.

9 Stupid Things People Say About My Health

By Crystal Lindell, Columnist

Below is a list of 9 things that are not helpful to hear when you are in the midst of debilitating chronic pain (and 11 things that are).

Fair warning, the language is strong — like my pain. Sorry about that.

1. Have you tried pot?

Piss off. First of all, I’m not allowed to. My doctor makes me take drug tests and if they find any trace of marijuana, they could cut off my opioids.

Second, it’s not like I can get Mary Jane at the CVS. Do I just randomly trust the local teen drug dealer to get me my medicine? For my body? That already hates me? That sounds like a great plan.

Third, pot is not a magical cure for everything wrong with everyone. It’s a plant. Not a potion.

2. You should lose some weight.

Fuck you. Losing weight is also not a magical cure all. And also, have you ever been on sleeping pills, pain pills and antidepressants, all at once? Because not only do those drugs make it hard to lose weight, they make you gain weight.

And OK, let’s pretend losing weight would magically cure me. I’m in pain right now, and I can only really lose a pound a week. So what am I supposed to do? Wait this out for a year or two until I get to the weight you suggest?

Oh, and also, screw you for telling someone who literally feels like they are dying that they should also give up one of the last good things in their life — delicious food.

Also, now I’m sick AND worried that you think I’m fat. Thanks a lot, asshole.

3. Just go to a chiropractor

I judge people who say this to me.

First, are you going to pay for it? Because my insurance sure as hell won’t. Also, it doesn't work for me. I don’t have a crick my neck, I have real issues. Issues chiropractors can’t solve. And personally, every single one I have ever been to has charged me hundreds of dollars for what basically amounts to the placebo effect.

4. What about acupuncture?

Screw you and your stupid needles. It doesn’t work. It’s the placebo effect. And again, my insurance company is not on board.

5. This is all part of God’s plan for you. You’re going through this so you can write about it and help others.

As the saying goes, Lord give me patience because if you give me strength I’m going to have to kill the next person who says this crap to me.

Okay, so assuming there is a God, He did not do this to me. Surviving constant debilitating pain is not part of some Almighty plan. And if it is part of God’s plan, then, well, I’m just going to say it — that is some bullshit.

6. You should give up gluten.

Boy bye. You want me to give up bread now too? Does it make you feel better to offer me this advice? Because if so, the only person it’s helping here is you.

Would you go up to someone who just had their foot cut off and condescendingly suggest that perhaps the solution to the blood coming out of their ankle is to just give up bread? No, because that would be insane. And asking me to give up bread is equally insane.

Gluten-free is also not a magic cure-all. On the other hand, the bread sticks at Olive Garden might be.

7. You really need to get off those pain meds. They’re so bad for you.

Sorry, but that’s bullshit darling. You know what’s bad for me? Being is so much pain that I literally can’t get out of bed for days on end. Being in so much pain that I can’t shower. Being in so much pain that I can’t work and lose my job. Being in so much pain that I want to kill myself. Those things are bad for me. Not the pain pills that help me live.

8. I’m praying for you.

Oh for God’s sake. And mine. Can you not? I mean, I get it, it makes you feel better. But let me just chill here DYING while I wait for your prayers to magically take effect. You think I haven’t been pleading with God for the last four years straight to make me better? Of course I have. Trust me, HE KNOWS.

And you telling Him isn’t going to change that. And it isn’t going to help me in any practical way. I mean, feel free to pray for me, just don’t let it be the only thing you do.

9. Well at least it’s not cancer.

Fuck you. Cancer sucks. But so does what I have. Asshole.

Some things you should say instead:

1.  I love you.

2.  I made you dinner. I’m bringing it over right now.

3.  I am driving you to your doctor’s appointment today. I know it’s two hours away. I’ll even pay for gas.

4.  I’m going to sit in on the doctor’s appointment and take notes and ask questions because I know you’re too sick to fully pay attention.

5.  Let me get that $50 co-pay for your prescription.

6.  I am coming over to clean your bathroom and do your laundry so you don’t have to constantly ask your mom to do it.

7.  Here’s some Taco Bell.

8.  I am coming over and we are just going to sit on the couch for hours, while you vent about how shitty it is to be sick every fucking day.

9.  I believe you.

10.  I know it sucks. I know it’s hard, but this world would be a much worse place without you and I really don’t want you to kill yourself.

11.  Here are two tickets to Paris.

The main difference between the first list and the second list? Most of the first list asks the sick person to do something, and most of the second list makes you do the something for the sick person.

It's harder, but much more effective. 

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.