While we might think we should ignore pain, or just "get through it", but in reality, living in pain causes all manner of harm to our bodies, to our mental states, and to our relationships with other people. Pain makes chronic disease worse, sometimes to the point of shortening life expectancy.
Be sure to alert the health care team to frequent (chronic) or acute (strong) pain, or any pain that interferes with the activities of daily life -- and to advocate for pain management that works.
Pain is generated from nerve signals throughout our bodies, interpreted by our brains. That means there is no test or proof to determine if someone is in pain, and no objective way to measure pain levels. The only person who can judge how bad pain might be is the person experiencing it.
So instead we have to rely on what people report, and track those reports over time, to accurately manage pain. Some of the ways to track pain levels are:
When people cannot speak for themselves (like in dementia, or with another chronic disease that makes it difficult to communicate), then caregivers and the people who know them best can still observe facial expressions or body movements to get a sense of their pain and track that over time.
Sometimes it can feel like the health care team is not taking pain seriously enough. (Without any outside "proof" of pain, it's too easily dismissed.) It may help to document the ways pain makes everyday life difficult or impossible, how it gets in the way of activities of daily living (ADL). If it feels like a medical gaslighting situation, here are some strategies for better communication:
Most people in the U.S. reach for pain relievers when they hurt. Drugstore shelves are filled with over the counter medications and pain-control devices; and prescription pain drugs are a huge percentage of total prescription sales. But pain comes from so many causes, and affects us so individually, that no treatment works on every one with the same health issue, and even doesn't work every time on the same person.
When looking for ways to ease pain, it helps to understand how different kinds of pain relievers work, including non-drug methods to relieve pain. Take a moment to scan through the links below:
Stronger pain treatments may be necessary to manage acute pain, the sudden or sharp pain that comes on from an injury, surgery, crisis, or another (usually) known cause. Often those are meant to be used for a short term, to avoid the risk of addiction or overdose. Controlling chronic pain, pain that doesn't fade or stop, with those higher-risk treatments can be really challenging.
Narcotics - medications containing opiates or other pain-relieving compounds that have higher potential for addiction - can still be prescribed if necessary; and in some cases these provide the most effective pain relief.
But as controlled substances, there are limits on how they can be prescribed, renewed, and dispensed (especially for drugs listed as Schedule II or Schedule III by the DEA). That may mean that caregivers need to take additional steps to keep their loved ones safe while taking these medications. Sometimes prescriptions cannot be renewed until only a few days before they run out, or may need re-authorization for each renewal. Also, whenever someone taking pain medications - especially controlled medications - need to have a medical procedure, medications need to be tightly coordinated with the anesthesiologists and other healthcare team members. Be sure to give them a full list of ALL the medications, including over-the-counter ones!
It can be equally dangerous to stop taking strong pain medication suddenly (going "cold turkey"). Be sure to talk with the health care team before making changes to dose or frequency.
Adding non-drug pain treatment can help avoid the risks of overmedication or addiction. D.I.Y. non-drug pain relief methods can be used at any time, too.
Other alternative / complementary medical treatments offer hope for chronic pain, but scientific evidence on how effective they are may be uneven. The most recent updates on evidence-based studies are posted at:
This can be very frustrating -- and also one of the most rewarding aspects of caring for someone, when care partners are able to advocate for their loved one's comfort.
Concern: the right dose at the right time
Some pain medications can be taken "as needed", but others need to be taken at specific intervals. Taken too soon could lead to overmedication; taken too late can bring pain flares, and a harder time bringing pain back under control. Keeping track of medication schedules is a familiar task for most caregivers.
Concern: watch for hidden extra doses
Keeping track of how much pain relievers someone is complicated, though, if they also take other medications, especially over-the-counter products. Acetaminophen (Tylenol, paracetamol) is often added to cold and flu remedies, making it too easy to accidentally take too much at the same time. Aspirin and ibuprofen are different medications, but they're both NSAIDs (non-steroidal anti-inflammatory drugs) so taking both at the same time increases the chance of side effects like internal bleeding. Be sure to check the labels, and make a note of the active ingredients in any combination medication.
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