14 Things People With Chronic Pain Wish They Knew Before Taking Opioids

Editor’s note: Any medical information included is based on a personal experience. For questions or concerns regarding health, please consult a doctor or medical professional.

The stigma that surrounds using opioids for chronic pain often means that people who decide to use them may not know exactly what to expect. Not everyone reacts to opioids in the same way, and it’s tough to anticipate what it will be like for you, if it’s even the right option and/or how others react to the news that you take them.

So, we asked our Mighty community with chronic pain to share what they wish they knew when they first began taking opioids. The reality of using opioids for chronic pain conditions is often obscured in discussions surrounding opioids, so we wanted to let real people who have used opioids because of a chronic illness share the truth about their experience.

Here’s what our community told us:

1. “[I wish I knew] how much I would be judged by doctors, friends and family for needing to use them, including the pain management doctor who is well aware of my condition. I choose to keep it private from a lot of people because I can’t take the judgment or the ‘Just work out, just get massages, just do this that and the other instead’ as if I don’t try all of those things in combination of my meds just to live a somewhat decent lifestyle… If I had other solutions that worked I would avoid it at all costs.”

2. “I wish I had known how much they can affect the digestive system. I take Lyrica as well, and in combination it can be a total disaster for the digestive system. I’ve finally found something to naturally treat this side effect (ginger), but it took me some hard years to just recognize where the digestive problems I was suffering from came from.”

3. “Just because I’m young (I’m 18) doctors don’t want to prescribe them because they’re afraid I’ll get addicted. They’re the only thing that helps with my pain, so why not take them until I can find another solution?”

4. “I wish I wasn’t so afraid of the stigma attached to it. Therefore, I wish I was better informed on the fact that pain can cause other issues (such as chronic headaches, nausea, fainting, tachycardia, flaring of various conditions, and on and on and on as your body’s autonomic responses to pain) so the stigma and the fight to ‘not be a wimp’ attached to taking opioids for chronic pain should not get in the way of your decision (with your doctor) whether or not to take a medication that could help you in a number of ways!”

5. “Opioids don’t work on some. Doctors have issues moving on to other meds because they too are narcotics. It puts the patient in a limbo.”

6. “Two prescriptions I was given were opioid-based and I am considered ‘susceptible’ to developing tolerance — i.e. I quickly build up a dependence. I had no history of drug use but within six weeks I had a dependence. Coming off it sucked big time and there is not enough support from insurance companies for care when that happens.”

7. “I wish I’d known how much they could affect my memory and cognitive ability. It was the opiates and not the pain that stopped me working. My employer won’t allow me to return to work until I am off opiates as it affects my work capabilities.”

8. “[I wish I knew] how hard it is to get them, how much I would feel like I have to prove myself to medical and non-medical people, how I would be instantly judged negatively for using them.”

9. “One is treated for needing them and they sometimes do not make the pain go away. I hate that it is only treating the symptoms and not curing the underlying cause, and is this it? Will I need to take these for the rest of my life for my fibromyalgia?”

10. “[I wish I knew] that finally someone would decide to manage my pain. My doctors believed me but didn’t make pain management a priority. Now opioids are part of my pain management protocol and my suffering is less.”

11. “[I wish I knew I would] constantly be told by doctors, ‘You take a lot of pain meds.’ I have to try to make them understand how painful this is. Also, now the pharmacist techs ask me in front of other customers nearby why I take these. It’s humiliating. Not to mention a little scary wondering if someone near me hears the conversation and might follow me out of the store.”

12. “I wish I knew that all the people making hurtful and ignorant comments didn’t have my best interest at heart. I really wish I realized the stigma around opioids, it may have prevented the tears I shed holding my prescription for pain medication. I’m not saying there aren’t people who abuse opioids, but I am saying that there are people like me who need opioids for chronic pain and would be responsible with them.”

13. “[I wish I knew] that I would be throwing up. A lot. I need them for my awful rheumatoid arthritis days, but since I also have multiple conditions that pertain directly to my digestive system, it can’t always handle the meds I give it. Most days I don’t take them because the pills are almost as debilitating as the pain.”

14. “[I wish I knew] I would quickly become addicted to them. Despite the stigma around that, it doesn’t make me a bad person. I just wanted to feel better and be able to function as ‘normally’ as possible to do the things I needed to do (get out of bed, make it to class, etc.). There’s a lot of discussion about how chronic pain patients aren’t all ‘drug seekers’ and things like that, but what about those of us it did happen to? Addiction doesn’t discriminate, and I didn’t choose it. My intentions were never bad and it seems like a lot of people fail to understand that.”

If you or a loved one is affected by addiction and need help, you can call SAMHSA’s hotline at 1-800-662-4357.