Hi! I'm Mariah. I am asking for your signature on this petition because people have a right to make informed decisions about their healthcare. Opioids are dangerous, and it is a big decision on whether or not to use them for pain management. When critical information is left off a drug label, it limits the patient’s ability to make informed decisions. It's up to the patient to decide if the risks outweigh the benefits, but how can that be accurately measured if we are not given all of the information about the effects of the drug on our health? Addiction and overdose are big risks to accept for the benefit of pain relief. This is why I am asking for your signatures.

Eight years ago, I was in a car accident. I had a burst fracture of my L1 vertebrae and bone splinters went like shrapnel through my spinal cord. When I woke up from surgery, the doctor said that regaining any function below the waist was unlikely. I was paralyzed. I was also told that opioids were the only effective way to manage the pain that I would be living with. I didn't want to accept any of that, but I am not a medical professional, so I put my faith into the healthcare system. To my surprise, my right leg started to gain muscle movement before I had even left the hospital. I was ecstatic, but after a few months at home the progression stopped. My left leg and internal stuff (bladder etc.) remained "asleep" and I remained in pain.

The next years of my life were harder than I anticipated.  I went to numerous doctors for numerous reasons, but none of them knew why my functional recovery stopped or if it would start again, or why I would get crazy infections, or why my wounds appear to heal then reopen years later. I don't even think they cared 90% of the time because now the only medical issue they saw was my prescribed addiction. Once I left the hospital I went from being a recovering patient to someone with an opioid dependency, and that's how I was treated. I had a lot of pain and a lot health complications, but the only thing I ever took away from those appointments was a suggestion to get on SUBOXONE. To say it was frustrating would be an understatement. 

Fast forward through eight years of misery to August 10th, 2024. I had hit my rock bottom and decided the opioids weren't effective at managing anything. The only thing they killed was my joy. I went through withdrawals cold turkey. and haven't used them since. On September 3rd the function in my left leg started returning.  I will be out of a wheelchair and able to walk unassisted one day!

I'm not a doctor, so I can't connect all the dots, but research studies published in medical journals indicate that by blocking the pain to nociceptive nerve receptors, opioids may be preventing the body’s natural repair mechanisms from taking place. When you’re injured, the damaged tissue sends signals to receptors in your brain via the spinal cord. These signals start a chain reaction in your body, eventually you heal, and the tissue stops telling your brain that it hurts. Healing time depends on several things, but the end result is that you move on with a normal life. By blocking those receptors, the correct processes don’t occur, resulting in excessive formation of scar tissue at the site of injury. This is important because it means decreased function of that tissue, and increased likelihood of pain and problems for the rest of your life. I believe that might be what is happening in my case. It's hard to say though, since there have not been any opioid studies over 6 weeks long that looked at health effects outside of the scope of addiction and overdose.

Until now, anyway! Here are the results from my personal 8-year study on opioids. The results? They suck! Almost all of the pain and health complications that I attributed to my injury were actually being caused by them. I concluded this because the pain stopped when the opioids stopped, and the complications are getting less complicated. On a good day, my pain used to be at least a 4 on the pain scale. Now, I am rarely even at a 1. There is a light behind my eyes again, and for the first time in eight years I have hope and know that I won’t die as another overdose statistic. This is why we need the labels updated!

This information about the side effects to tissue repair and what that means in the process of healing, and any other known or suspected side effects or adverse reactions needs to be added to the box label of all opioids immediately. If more people knew that average injuries could evolve into lifelong pain and suffering because of pain medication, they wouldn't take those pills. I know that I would not have filled that 1st prescription. Maybe I would already be walking, maybe I wouldn’t be peeing through a straw. Maybe accurate information and education are key steps to ending this epidemic. Maybe, maybe, maybe….

Here's a final thought: in 2023, a new side effect- Opioid Induced Hyperalgesia (OIH)- was added to the labels. OIH is pain and increased sensitivity to pain caused by taking opioids. This has been known about by the drug companies since at least 2004. Serotonin Syndrome has been known about since at least 2005 (and I'm being really generous with those dates), but wasn't added to the labels until 2016. What else is known that they are not telling us, and at what point do we demand change? Thank you for reading!