By Jillian Drexler, Guest Columnist
I'm writing because I want to share the story of the “opiate and heroin epidemic” from the point of view of a chronic pain patient.
I was diagnosed with fibromyalgia last year. I also suffer from bulging and herniated discs in my neck and back (due to 3 car accidents that were not my fault), migraines, sciatica, and PTLS (Post Tubal Ligation Syndrome), just to name a few. More than likely the fibromyalgia was caused by the 3 car accidents, but I'm not certain.
I never imagined my life being what it is today. I don't know from one day to the next how I'm going to feel. I don't know if I'm going to feel just okay or like I've been ran over by a truck multiple times. It makes it hard to plan my day(s) out.
If the pain itself isn't draining enough, the uncertainty sure is. The pain drains you in every way imaginable -- physically, mentally, emotionally, socially and beyond. And then there are the times when you don't sleep. You can't sleep because of the pain and not sleeping triggers more pain.
I lost my insurance after returning to work after my son was born. I couldn't afford it through work, yet I no longer qualified for Medicaid. I feel that if I had insurance all those years, the severity of my pain could have been prevented or drastically reduced.
I am not prescribed any pain medications for my conditions. I know what medication helps my pain and helps me have some quality of life, but unfortunately I'm denied this medication.
I'm on an anti-depressant whose off-label use is to treat fibromyalgia, a seizure medication whose off-label use is to treat nerve pain, and a muscle relaxer. The muscle relaxer and seizure medication provide the most relief, but they don't completely help me. Over the counter pain medications don't scratch the surface of the pain I endure on a pretty much daily basis.
When I first called my doctor last fall to schedule an appointment, I was immediately told she does not prescribe narcotics and was asked if I was okay with that. I was fine with it because I didn't know what was wrong with me.
While seeing her, she mentioned referring me to a neurologist and pain management on two separate occasions. This hasn't happened yet because my insurance is still up in the air, even though I went through a period of unemployment and am currently working part time.
What am I supposed to do? Never in my life did I think at 32 years old, I'd be in a fight to have some quality of life. Why is this happening? It shouldn't have to be this way.
At an ER visit earlier this year, the emergency room doctor insinuated I was a drug seeker. I'd just had gallbladder surgery a week prior and because I was still in pain and seeking relief, I was pretty much deemed a drug seeker.
A lot of these doctors are pegging the wrong people as drug seekers. Chronic pain patients didn't ask for their illnesses. We don't enjoy missing the pain-free life some of us had, having to limit the number of hours we can work or even quit our jobs, and missing events with family and friends.
Most of all, we don't enjoy being judged for needing pain medication in hopes of having a pain-free day so we don’t spend all our time in bed. This isn't life. It’s simply existing. Some of these doctors forget about the Hippocratic Oath they were once required to swear by. They forget they work for us.
With the recent adoption of the CDC opioid prescribing guidelines, many chronic pain patients are left to suffer. Either they're like me and aren't getting any pain medication, their prescriptions are being cut, or they're being taken off of their pain medications cold turkey. This was supposedly been done to combat the opioid and heroin epidemic. I agree there is an issue with abuse and something needs to be done, but why does it have to be at the expense of chronic pain patients?
While the opioid and heroin epidemic are the focus, there's a suicide epidemic in the pain community that's being ignored. Some chronic pain patients are in so much pain, they feel the only way to stop their suffering is to end their life. No one should be made to feel that way. What ever happened to our right to life, liberty and the pursuit of happiness? The government is taking away the very rights it has an obligation to protect.
I realize not every chronic pain patient benefits from or can take opioids. A lot of us benefit from marijuana. But that's not legal in every state. There has to be a better way! And, why wasn't a better way found before preventing us from getting the medications that help us to function? Why do the lives of opioid and heroin addicts supersede those of chronic pain patients?
The CDC guidelines say pain patients should find other ways to control their pain. The biggest suggestion I've come across is Tylenol. If Tylenol is all it took to relieve chronic pain, I don't think so many chronic pain patients would be ending their lives to stop the suffering. Tylenol just isn't meant to help with chronic pain.
What other options are there? Massage and acupuncture usually aren't covered by insurance. And, with a lot of chronic pain patients being forced to quit their jobs or work reduced schedules, most of us can't afford to pay for alternative treatments out of pocket.
So, we can't have our prescription pain medications, marijuana is still illegal in many states, a lot of us can't bear physical therapy, and over the counter pain medications just don't cut it. What are we left to do? It seems that suffering animals receive more compassion and concern than human beings.
A few years ago, I would barely take an aspirin for pain, let alone a prescription pain medication. I was more physically active, took vitamins and supplements, and was overall a happier, productive and somewhat healthier person. I didn't look down on or judge those that needed prescriptions to live.
Fast forward to today and I still take supplements and vitamins, yet I'm unable to be as physically active as I was and take several prescription medications. I've lost so much -- my career, quality time with family, my independence, and being able to do a lot of the things I'd come to know and love. I feel as though I'm not even the same person I used to be. I'm a shell of my former self.
In the midst of all of this suffering, I've gained something as well. A few months ago, I was introduced to #PatientsNotAddicts on Facebook and on Twitter. #PatientsNotAddicts is an advocacy group whose mission is to show the world chronic pain patients are not addicts. I am the state representative in Ohio for #PatientsNotAddicts.
I've learned so much from the group and its members. I take what I learn and have experienced and share it with other chronic pain patients. There are a couple of people who I've formed friendships with. It's great to have friends you can talk with and who understand what you're going through.
In closing, I just want to say it is not a character flaw to need prescription pain medications. However, it is a character flaw to be okay with treating all chronic pain patients as though we're addicts. Not only should it be illegal, but it's just plain wrong. It shouldn't be this way! How are those responsible for allowing this to happen able to sleep at night?!
Jillian Drexler is from Cincinnati, Ohio.
Pain News Network invites other readers to share their stories with us. Send them to: editor@PainNewsNetwork.org.
The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represent the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.