The reports we see and read about prescription pain medication don’t always tell the full story. Information and opinions often focus on the “opioid epidemic,” leaving out the experiences of millions of people who use pain medication for serious illnesses and conditions. The side effects, stigma, and even effectiveness of chronic pain medications aren’t often a part of the public discussion surrounding these drugs.
We asked our Mighty community with chronic pain what no one talks about when it comes to pain medication — but should. To help people truly find relief from their pain and increase compassion and support for those who use pain medications, these challenges and concerns must be brought into the open.
Here’s what the community told us:
1. “I feel like I cannot ask for pain medicine that I need (narcotics) because I’m terrified I’ll be labeled a drug seeker. This happens when I’m admitted to the emergency room and when I talk to my regular doctors as well.”
2. “I have to decide when the pain is severe enough to warrant pain medication. When you live in chronic pain you can get used to the background pain and gradually adjust your life around it.”
3. “A common erroneous belief is that opioids always cause euphoria/a “high”/etc; not true. I’ve been prescribed many different opioids over 20 years of pain treatment and have never once felt an emotional effect such as feeling high/euphoria/feeling emotionally ‘better’ or happier in some way. Not once.”
4. “For me, I think it’s the feeling of abandonment by my doctors. Everyone seems to pass pain management and quality of life off as someone else’s issue. I feel like my doctors only care about keeping me alive and not what being alive is like for me.”
5. “It was never discussed with me how much of my life I’d get back with pain relief. That was a gift.”
6. “How it can and does affect our sex lives! Medications not only have side effects but they interact with a lot – heck, even vitamins do. Often it seems like doctors forget to mention possible sexual side effects because they’re too timid or don’t think we have sex.”
7. “They do not work nearly as well as people think they do. Somehow people think we take medication and become hooped on them. Well, no, because it is dealing with the pain but only to a pretty limited degree. More like pain dullers than painkillers. If you are on pain killers there is an assumption all medications are pain killers and that is all we are looking for. Well, no, we are looking for pain management.”
8. “We don’t usually want it. There is a stigma that we don’t actually need it and just need to exercise more or eat better. It’s not that simple. The side effects are miserable but still outweigh the pain of not taking them.”
9. “No one brings up the battle. The battle between is your pain bad enough to deal with the side effects of constipation, brain fog, dizziness, lethargy, possible addiction. Or can you just battle with the pain yourself.”
10. “The weight gain that comes along with taking meds for pain has made me feel so self-conscious and uncomfortable in my skin. Learning to love and accept myself again when so many things are out of my control has been a tough hurdle to get over.”
11. “Not all of us can use pain medication. Narcotics/opioids sometimes have zero effect on certain people with lesser known disorders.”
12. “Talk about the price and the epidemic of people who have had to choose between medications and food due to the regularity of needing to take medications.”
13. “It’s OK if you decide you want to stay away from them… some doctors will try to make you feel guilty if you don’t want to take them. It’s a personal choice that every individual should make on their own. (P.S. I am not against them, I just know too many people who have told me their bad experiences and it’s a personal choice.)”
14. “The emergency that can happen if you run out and can’t get a refill quickly. You don’t want to press too hard about it or go to the ER because you’ll sound like a drug seeker. So, you deal with all the alternative methods for pain relief (that aren’t as effective) and put your body through the wringer of being in a pain crisis, which can elevate your pain levels for long periods of time after you even get your prescription filled.”
15. “I don’t see much talk about long term opiate use… The fact that our bodies build up a dependency to the medications we are prescribed (some of us anyway) and the fact that people can become physically dependent on many different medications… and that does not mean they are addicted. People have become so afraid to talk openly about the pros and cons of their pain medication experiences out of fear they will be judged, labeled, and ostracized! These are certainly topics we need to see out in the open!”
16. “If the object of pain management is ultimately to reduce reliance on pain medication and increase functionality, then there has been a gross lack of forethought by health authorities as to what the end game of this strategy actually means for patients. The lack of support for withdrawal symptoms may cost lives and cause widespread, horrendous suffering.”
17. “We have to choose between certain medications because they can’t be taken together. Like, I have insomnia, anxiety, and muscle spasms. So at night it can be a gamble of which problem is currently the ‘worst.’ Can’t treat the muscle spasms and insomnia at the same time because the interactions can be so bad you can stop breathing. At the very least, I’ll have a very hard time waking up in the morning.”
19. “Side effects. I have had several prescriptions and no doctor ever discusses possible side effects or other solutions. They just expect you to read the pharmacy pamphlet and be done. There is so much more associated with pain medication that should be discussed. Some of the side effects harm more than the medicine helps.”
20. “Medication can disrupt your life just as much as the pain. The medications can cause severe stomach upset, make you drowsy to the point you can’t function and cause constipation that leads to dehydration.”
21. “Needing daily medication to live a healthy and fulfilling life is nothing to be ashamed of. My doctor never mentioned the stigma behind the medication I take and the way people would look at me. This dialogue needs to be established early on. Doctors need to reassure their patients that it is OK to need medication to regulate their pain.