On August 14th, 2015, the FDA approved children as young as 11 years old for the drug Oxycontin. There is public outrage and disbelief at the thought of children so young taking such powerful opioids in the midst of the current “prescription drug crisis.” Although there is a great deal of public awareness for prescription drug addiction, it’s important we also understand who this medication is intended for.
I found the article about the new FDA approval on the timeline of a friend who is passionate about raising awareness for addiction issues. She and her friends view this news very differently than I do because of our individual experiences with opioid medications. On one end, prescription pain medications can be abused, cause addiction, ruin lives, and even cause fatal overdose, tragically. In my experience as a chronic pain survivor, I view pain medications like Oxycontin as a tool for temporarily relieving the suffering of a person in severe ongoing pain, the improvement of quality of life, and in the worst cases, prescription pain management can be life-saving.
The drug Oxycontin or “Oxy” is widely known for its addictive properties and high performance on the black market. The drug was reformulated 5 years ago to make it more difficult for individuals abusing it to get a “fast high,” though its reputation has not diminished.
This is Lucie. She has Superior Mensentric Arterial Syndrome and Complex Regional Pain Syndrome. She was active and healthy until the excruciating pain took over her body. Now, she is in pain all day, every day and night, begging her mother to take away her pain. [How you can help Lucie]
This is K. Chandler Rosemont’s experience in physical therapy. She has CRPS/RSD, or the childhood name RND. Because the nerves are so hypersensitive in the disease, even the slightest touch and movements are unspeakably painful.
To those reading this who have loved ones who suffer from addiction as I do, you may be thinking that making pain medication more widely available is the worst thing to do in this prescription drug climate. Actually, pain medications are becoming harder and harder for doctors to prescribe. Every year, the regulations tighten around doctors prescribing month to month opioid pain medications without refills, blood tests and urine samples are often required (state by state basis), there are strict patient contracts, etc. If a patient does not comply, they are terminated as a patient, and the black mark on their medical record follows them. That is protocol for pain management, and it causes pain patients to view their medications as seriously as they view their pain. (Read more in my article, Pain Pills: Chronic Pain Sufferers Speak)
In response to the growing public awareness of the problems surrounding prescription pain medication addiction, both chronic pain patients and doctors are under tighter regulations each year. However, since 2004, children diagnosed with chronic pain has increased by over 800%! So this approval by the FDA is certainly not unwarranted.
Personally, I believe the bigger problem lies with non-pain management doctors prescribing pain medication with a cavalier attitude. This past year, one of my relatives was prescribed a pain medication after she was seen for a sore throat. Dentists often prescribe a full month’s supply of strong pain medication before knowing whether or not the patient will be able to tolerate their minor after-procedure pain. Studies show that less than 3% of chronic pain and cancer pain patients are actually becoming addicted to their pain medication; chronic pain patients can typically stop taking the medication on their own. However, when pain medication is prescribed for acute, healing injuries without concern of addiction history, doctors don’t consider if the short-term pain could be tolerated without the medication, or if there is an alternative to manage the pain, the average person is put at greater risk for becoming addicted.
It is difficult to think of children suffering in excruciating, non-stop, pain every day, but this is a reality we cannot ignore. Complex Regional Pain Syndrome is a debilitating neurological pain disease that has deteriorating effects on muscle tissue, it shrinks bone, and changes the brain and nervous system to feel pain at an outrageous level. CRPS also causes the skin around the “affected area” to turn purple, black, blue, causes swelling, changes skin temperature, and the skin can begin to deteriorate as well. It is considered more painful than amputation, childbirth, or cancer pain, and there are children living this nightmare every single day. Children suffer from a variety of neurological and muskuloskeletal pain conditions just like adults do. Children are treated for disabling chronic migraines, Childhood Fibromyalgia, and tragically, children are treated for cancer pain.
Oxycontin has been approved by the FDA for pediatric prescription for severe cases of chronic pain and end of life care in children ages 11 to 16. Before it can be prescribed on a regular basis, there is a protocol to make sure the child can tolerate the medication safely. Interestingly, there is only one other opioid pain medication approved for pediatric pain management- the Fentanyl Pain Patch. If you have ever been prescribed any kind of medication to help manage a problem with your own health, you know that it can require trying a few different types of similar medications before you and your doctor find one that helps you without causing intolerable side effects. Until now, children suffering from debilitating chronic pain had only one FDA-approved option to try for pain medication.
There is still the question of theft. Pain medication is often stolen by relatives or house guests who struggle with addiction. I have heard many stories of spouses and caregivers who skim a few pain pills each month when they pick up at the pharmacy. One fellow pain patient told me she kept her medications in a heavy locked safe that was bolted down, but a family member still managed to steal her safe and medications inside. This is a real issue that should be part of the awareness of opioid pain medication addiction along with the patient’s responsibility to protect his or her medications. However, just because there is a public addiction issue does not mean individuals in pain should be deprived of proper care. One problem does not supersede the other. Would you tell a child screaming and writhing in pain every day without sleep, unable to go to school or play with her friends that she should be denied some relief?
I personally think that a child suffering should have access to pain medications while they seek out other methods of treatments. We know that children respond better to alternative treatments than adults do; however, that doesn’t mean they should have to wait months or years while trying treatments and procedures to have improved quality of life, nor should they have to suffer for years until they are “old enough” to receive proper pain management.
I am interested in your thoughts. Please share them below in the comments section.
She hasn’t slept for days. The pain in her leg reminds her of ten million tiny coal miners chipping away at her bone marrow with their axes, sledge hammers and sharp picks. “When do these little guys ever take a lunch?” she wonders. They set off fire bombs from the inside of her, destroying chunks of tissue, muscle, and shards of bone. They light the fuses and her nerves shoot like electricity from one end of her leg to the next, making her gasp for air. Now, her entire leg IS pain. It is no longer a leg. It is no longer HER leg. It belongs to a monster. To a disease she does not yet understand.
The limb is only pain and fire and crushing, sawing icicle bone. When she closes her eyes, she cannot picture what the leg looks like. She can only see purple and ice blue with white. Like a force-field that radiates around the limb, the colors have replaced flesh.
She waits for the sun to rise for her doctor appointment. All night, she recalled her symptoms again and again. She can’t leave anything out this time. He has to understand- I have to make him realize what is happening to me. I cannot live like this. I won’t. I can’t do it. He has to help me. I will make him understand.
Five hours later, back in her bed, she is barely conscious now. Sleep still will not come, but her mind is groggy from pain. Her heart races, body shakes, face tingles and room spins; all that she registers is pain. She feels herself floating away. All but for the leg. It holds her captive. She can’t keep her eyes open. Slow tears stream down her face. Flashes of the past few appointments cut through the fog.
Orthopedic: “I’m sorry to tell you, Complex Regional Pain Syndrome is the most painful condition I’ve ever seen. You are so young…”
Physical Therapist: “You have to let me touch you. Stop exaggerating so much. You have to try…Stop crying!”
Neurologist: “I know the spinal injections are painful, but there aren’t many other options.”
General Practitioner: “Pain medication is just really hard to prescribe these days. How about some more extra strength prescription Advil?”
Two nights later, she is in the emergency room screaming and writhing around in agony. Her fiancé rushed her there when he saw her blackened leg, 3x the size of the other, and his beautiful, 20-year-old love rolling around in her bed, moaning, barely able to form words. Even in her state, the doctors and nurses look at her with suspicion. “She has CRPS,” says the fiancé with an obviousness in his voice, assuming they will then finally understand. No, CRPS is a condition the doctors and nurses do not recognize. Her swollen, blackened limb with sores developing around the foot do not remove the look of doubt from the physician’s face. “She can see her doctor for pain medication,” he says, never looking at the girl’s face.
From across the Emergency Room, a nurse rushes over and pulls the doctor aside. After their private discussion, that angel nurse is lead on the team and the shrieking girl gets pain medication immediately. “Don’t stick her with any needles and keep away from this girl’s leg, everyone!” directs the angel nurse. She tapes a sign to the bed saying “NO STICKS. DON’T TOUCH LEGS.” After the girl had relaxed some, the doctor sends her home with a prescription for pain medication and anti-inflammatories.
She finally had some hope. The medication wasn’t helping the pain very much, but she did get a few hours of sleep, finally. She felt more like herself than she had all week. Knowing there was a medical professional out there who knew about her condition and cared enough to try to help her…was like a window just opened and she could breathe again. Maybe in time she would find a doctor like that nurse. Maybe if someone could help her…maybe she could try to do this.
Then, her mom stormed into her room. “Your father and I have decided we want you out by tomorrow.” Wait…what? What’s going on, mom? “We know you have been going around trying to get drugs from doctors. After your little trip to the emergency room last night, we know you got a big bottle of pills and we want you out. We won’t have an addict living in our home.”
This is inspired by a true story, but “The Girl” is un-named because her story is shared by too many who face this disease Complex Regional Pain Syndrome (RSD) and other types of severe chronic pain conditions. Chronic Pain does not make you an addict. Taking prescribed medications that allow you to function and survive is not the same as addiction. If you love someone with CRPS/RSD or a severe chronic pain disorder, please do some research on their behalf and understand that the media does not portray pain medication appropriately, from the perspective of chronic, terminal illness sufferers or from doctors who manage chronic pain disorders.
For more information, read Pain Pills: Chronic Pain Sufferers Speak
There is a great debate in America regarding prescription pain medication. From someone who hears this issue from fellow chronic pain sufferers regularly, we have a dog in the fight, too.
Those with chronic, non-cancer pain have been criminalized in the last 10 years along with their doctors because of the medications being prescribed…wait, no…flip that, reverse it. In the last 10 years, because of individuals abusing their pain medications, addicts buying opioids on the black market, and doctors over-prescribing irresponsibly, chronic pain patients, and their doctors have been treated like criminals.
Founding a support group for Complex Regional Pain Syndrome: known as the most painful condition one can endure, let me be clear that even people with the worst possible pain do not want to take pain medication. Why not? When they are screaming, crying, homebound and barely holding on, why won’t they take 1 tiny little pill? For one, they are afraid of becoming an addict! They are worried their family will think less of them. They are anxious that if their doctors prescribe it once and it helps, how will they ask for a refill without sounding like the “pill seekers” they hear about on television? Too many times people are nervous about taking their prescribed medication for severe chronic pain because of what they have seen on talk shows and read about on the internet.
Well, here’s something else to read…
A study in 2007 sampled 15,000 veterans with chronic pain (Edlund et al.). They were all given opioids, and only 2% abused his or her medications. I have read other studies like these for chronic and cancer pain in which the addiction or abuse rate is always extremely low. Apparently, people in excruciating pain, 24/7, every single day for years are managing his or her pain medication AS PRESCRIBED. This may shock some of those television personalities.
Why is it that those with chronic pain are much less likely to become addicted? In those without chronic pain, opioids cause a sense of euphoria. For those WITH chronic pain, the medication does not match or overcome the pain. A neuropathic pain study published in 2003 by the New England Journal of Medicine found that opioid pain medication only gave 36% pain reduction at the highest dose possible before side effects of the drug were intolerable. Those with such extreme pain continue to feel pain; therefore, how can there be a medicated euphoria? Maybe this is why there is a much lower rate of addiction in chronic and terminal pain.
Many of those I encounter are so conservative with their medications. They take as little as possible, even when pain is high. When pain is low enough to tolerate, most don’t take any pain medications. No one wants to take any type of medications. Those I encounter do what is available to them to manage pain: treatments, therapies, procedures, etc. Pain medication is seen as a means to an end. A short-term negotiation until there is a better pain relieving strategy. But for many, it is a necessary part of living, coping, and functioning with painful neurological disease.
Doctors who treat chronic pain exclusively are held to increasingly high protocols by the government. There are more changes all the time concerning how they can and cannot care for their ailing patients. With more government restrictions, more paperwork, more required seminars for doctors and nurses… Do you think MORE attention and time is being given to patients, or less? If you are a patient who sees a pain management specialist, you would be expected to sign a patient contract. The doctor has communication with your pharmacist, and you would be expected to furnish monthly urine and/ or blood depending upon which state you live in. Because of the current climate regarding these “controlled substances,” those with painful chronic illnesses like RSD, Peripheral Neuropathy, and Trigeminal Neuralgia who go to a hospital for an emergency may be treated like a criminal until their pain doctors can be contacted. Imagine if you were the one having a medical emergency!
Just a side note, in my research I learned that a doctor’s office can be thought of as a “pill mill” if 50% or more of its patients are treated for pain management, even if they offer physical therapy, biofeedback, counseling, acupuncture, interventional pain therapies, etc. If the doctor is chief at the local hospital, she still runs a “pill mill” up the road because she primarily treats people with chronic pain or cancer pain. Nice, right? CDC Pain Clinic Regulations
Whether you are judging someone else with chronic pain for taking pain medication, or if you are judging yourself because you think it means you are somehow weaker for taking your meds, please ask yourself a couple of questions. If you had another condition… cancer perhaps, would you feel guilty or like you had caved in by starting on the prescribed chemotherapy protocol? If you had diabetes, would you deprive yourself of your insulin, only taking half the dose, when you are on the verge of going into a diabetic coma? Do you feel shameful about the other medications and treatments you are being prescribed currently for pain?
If you are taking your medication as prescribed, then is your concern about becoming addicted, or is it the social stigma you worry about? For those judging, if your sister, son, or elderly grandfather were suddenly touched by crippling degenerative neurological pain, wouldn’t you want them to have the best Quality of Life possible while they explore ALL available treatment options? If every treatment they tried in the next 5 years failed to help, but you knew pain medication would keep them functioning through the pain, would you still want them to suffer the next 5 years without pain medication?
Pain medications can be dangerous, yes! They ABSOLUTELY should be taken with caution, with respect, and with the same seriousness with which you regard your disease. Along with all of the voices yelling about the pain medication issues, people who have chronic pain tend to have quieter voices, but please remember, we are still speaking.
Thank you so much Nathaniel. Go buy something awesome from his shop!