Doctor, Please Sign My Pain Agreement

By Jennifer Hochgesang, Guest Columnist

Doctor, I have a pain condition. It cannot be measured or quantified. You have to rely on me - the person living in my body every day for my entire life - as an indicator of how I am doing and how the treatments and medications are working. I may not respond in ways you think I should.

If it was simply blood pressure, you could take it and judge where I am on your own. Unfortunately for both of us, my condition is not that simple. A rapid pulse and high blood pressure is an indication for me that I am in a lot of pain.

I am used to being in pain all day long every day. I have a good mask and I'm especially quiet when in pain. Please, write that down. I am gabbing a lot and feeling okay today, but when I am in great pain – I will be very, very quiet and still. I may even force a smile.

We are tricky creatures, chronic pain patients, and it takes time to understand us individually. You did not pick an easy job.

Do you see where I am going with this? Yes, we need to create a bond. I will share the signs of my body with you. Will you promise to listen? I would like that very much.

At the very least, let’s agree on my pain levels. When you ask me for a number, that number should mean the same thing to both of us. These numbers are very subjective, so let me help you.

A number 3 means that I feel discomfort, but I can get on with my day and even preoccupy myself with other things. A number 7 means I am barely able to talk because that is a trigger for my facial pain from trigeminal neuralgia. When that happens, I use sign language to communicate with my daughter.

If I give a number 10, I will be in the ER and will need the doctors there to listen to me because I know the only medication that will stop the flare. I have only reached 10 three times in my life, so you will need to know what it means when I have it. I won’t be able to talk. I’ve found that IV Dilantin is the best thing for my worst flares, but I’ve had doctors unwilling to give it.

If I’m at number 11, I will be unconscious and talking to a dream doctor so I will trust you have that part covered.

Like I said, you did not pick an easy job. But, neither did I. Please don’t forget that I did not choose this. Our appointments go by so quickly and sometimes there’s isn’t enough time to ask questions. I need a little extra time to talk about side effects or a possible procedure. Can we make sure that’s possible?

You will need to get to know me. I have trigeminal neuralgia and multiple sclerosis. I am a mother with a beautiful, wonderful, kind, smart and silly 7-year old daughter.

I am disabled by pain 24/7, but want to work with you to change that so I can care for my daughter and play with her; so I can call my friends and clean my basement; so I can do my four-month old bills; and wake up and actually smile genuinely and fearlessly one day.

I promise I will sign your pain contract and follow it faithfully, but you need to sign mine as well.

Jennifer Hochgesang lives in Illinois. Jennifer proudly supports myMSteam, an online social network for people living with multiple sclerosis, and Living With Facial Pain, an online support group for people living with facial pain.

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.

I Am Not an Addict or a Criminal

By Emily Blankenship, Guest Columnist

I was healthy and rarely even took an aspirin until a bad car accident when I was 33 years old. I am now 60.

I have not had one day or moment without pain since the accident, but I’ve had many different doctors. All of them told me they will not prescribe pain meds strong enough to remove the pain completely. They would only give me something to lessen the pain so that I could function.

But I can't function! 

My life since the car accident has been one of horrible physical and emotional pain, lots of doctor visits, depression, and lots of pills. I now have fibromyalgia, diabetes, arthritis, and a long list of other medical conditions. I take 20 different pills and get 2 injections daily. 

I have been practically on my knees, crying and begging doctors for pain relief. I’ve also been in a hospital psych ward 5 or 6 times because I was suicidal. The doctors would still not help me.

They tell me to lose weight, walk for exercise, move more, try yoga, meditate, etc.  All of that is hard to do when you are in so much pain you can't get out of bed! 

I lost my regular life after the accident. Friends disappeared. I could not work. I can no longer do activities that I loved, like bowling, cross stitching and photography, because my hands shake too bad. I am isolated and depressed.

EMILY BLANKENSHIP

My current doctor recently cut down my pain meds from 6 pills a day down to 3 pills. And now I must have my blood drawn for drug tests before the doctor will write a prescription for a refill. Crazy!  I am NOT an addict and NOT a criminal. I just want relief.

My doctor will only write pain med prescriptions for a 28-day supply, even though there are 30 or 31 days in a month. I run out of pain pills the last week of every month. No one should have to live this way. I am also required to have a doctor’s appointment every 2 months to talk about my pain before he will renew my prescriptions.

My experiences have led me to believe that the doctors do not believe chronic pain patients when we tell them we are in pain. Winter is the worst time for me. My pain levels are generally 8 or 9 in winter, even when I’m on pain meds. Summer is my best time, the pain levels can drop to a 3 or 4.

Yet even if I log all my daily pain levels and show it to my doctors, they act like I was just having a bad day.  One doctor actually said that to my face! 

My last three doctors made me sign a pain contract stating that if I ever go to another doctor and try to get pain meds that I will be dropped as a patient.  Scary thought. I have never done anything like that and have no intention of doing that, but the fact I had to sign a contract made me feel like a criminal or an addict.

I am in control of my actions. I am not an addict who will do anything for pills.

Emily Blankenship lives in Oregon. She is a member of Chronic Illness Advocacy and Awareness Group (CIAGG), a Facebook support group for chronic pain and disability sufferers.

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.

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.

Signing a Pain Contract in the Age of Opioid Phobia

By Crystal Lindell, Columnist

I know, I know. Opioids seem to be all that pain patients talk about these days. Blah, blah, blah. We get it, you need drugs. Let’s move on already.

But I don’t have that luxury. Opioids are, for better and for (mostly) worse, a huge part of my life. And I recently decided that I was:

A. Going to need to continue taking at least a small dose of hydrocodone long-term

B. That I really needed a slighter larger, “small dose” to be able to function.

I have what’s called intercostal neuralgia on my right side and the best way I can think to describe it is that I always feel like I have three broken ribs. The pain is no joke. And although it seems to be more manageable these days, it lingers and it hurts like hell, and opioids are the only thing I have found that even kind of helps.

Without hydrocodone I am in too much pain to shower regularly, check email, do my makeup or even sit a restaurant and eat.  With hydrocodone I can pretty much do all those things, like a typical health person who’s just a bit high. 

And yes, I know they are addictive, I know how hard they are to get off of, and I know that withdrawal is hell. I’ve been through it. I took myself down to 5 mg a day from 60 mg day when my pain became more manageable. It wasn’t easy. It took about a year for my brain to deal with that, and the withdrawal issues sucked.

So, when I say I need to be on hydrocodone, I say it with all the wisdom and caution that comes from the personal experience of dealing with opioids — and their side effects. 

And honestly, I’m among the lucky ones. When I called my doctor to ask if I could up to 10 mg a day, he agreed and knew I wouldn’t be asking if I hadn’t given lots of thought to the pros and cons of that choice. 

But that doesn’t mean dealing with opioids doesn’t also suck. 

First, I had to drive two hours each way to see him, because that’s how far away the closest university hospital is to my house and my case is too complex for the local small town doctors. And, as a reminder, I live my daily life feeling like I have three broken ribs. Driving two hours each way sucks. 

Then, when I got there, I had to take a drug test. Some politician somewhere decided people on opioids shouldn’t be using pot. Okay. But peeing in a cup sucks when you’re a woman. It gets all over your hands. You miss the cup and don’t collect enough. It’s just messy. 

But fine. Whatever. 

I peed in a cup. Good news. I’m clean. Well, I mean, aside from the hydrocodone, I’m clean. 

Signing a Pain Contract

Then, I had to sign what is formally called the “Controlled Substances Medication Agreement” — basically an opioid pain contract. At first blush it doesn’t seem like a big deal. As long as I’m a good person, there shouldn’t be any issues, right?

But the thing is literally 21 bullet points long. And it feels like I signed away all of my rights. 

The contract includes things like bullet point number 8, which requires that I get my prescription filled at the same pharmacy every month.

This is annoying because I use my local small town pharmacy, which is closed on Sundays, holidays and every night at 7 p.m. And if I’m due for a refill on a Sunday or out of town for work when my prescription expires, I can’t get it filled early, as bullet point number 14 clearly explains. 

Bullet point 14 also says I have to keep all my drugs in a locked cabinet or safe, and if they’re ever stolen I can’t get an early refill. Guys, that’s just not practical. I take these meds as needed, and sometimes that means I’m at the grocery store or visiting a friend or eating at Taco Bell, and then suddenly they are needed. And at those times, they are in my purse, which doesn’t have a lock on it. 

Bullet point number 11 says I can’t go to the emergency room for opioids, which sucks because sometimes my pain spikes and the only thing that gets it under control is a shot of dilaudid, which I usually get at the ER. I guess now when my pain spikes, I’m supposed to drive two hours to my doctor and hope he’s available to deal with it. 

Oh, and if I’m ever too sick to make that drive, nobody is allowed to pick up my hydrocodone prescription unless I have pre-authorized them, as per bullet point number 13. Of course, it has to be a written prescription — doctors cannot legally call in or fax hydrocodone  prescriptions anymore. 

I also agreed to get random drug tests, allow pill counts. and basically just give up all of my dignity. 

Fine. Okay. I need these medications. So I signed on the dotted line. And I guess I just have to hope I never get robbed, have a flare up or need a refill on a Sunday. 

The thing about opioids is that everyone assumes that if they ever need these drugs they will be able to get them. That anyone who’s truly deserving doesn’t have anything to worry about. But I have to tell you something: I’m a good person. I’m in real pain. I need these drugs. And I’m barely able to get them.

I understand how powerful these drugs are. Going off morphine was literally hell for me. But you know what else is hell? Living every day of your life feeling like you have three broken ribs. 

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.