Describing pain is key to treatment, but it’s not always easy to do

Using descriptive adjectives when speaking with healthcare providers can help

Jen Cueva avatar

by Jen Cueva |

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In previous columns, I’ve shared about my ongoing struggle to balance managing pulmonary hypertension (PH) with other health issues like chronic pain. Both conditions require constant attention to ensure optimal health and quality of life. One crucial aspect of living with chronic pain is describing it, which, believe it or not, can be surprisingly challenging.

A former nurse like me should have it down pat, right? Yet despite my professional background, I still find describing my chronic pain to be a daily struggle. I remember asking my former patients detailed questions about their own pain, trying to capture every nuance. Now, as a patient, I lean on those early lessons from nursing school: Pain is subjective; it is “what the patient says it is.”

It’s often easier to share details of our pain with our partners or friends, but it’s crucial for us to be able to communicate with our doctors as well. Social stigma about pain medications and the fear of being labeled a “drug seeker” can make this daunting. But accurately describing pain is vital, as different types can signal additional areas of concern. Think “aching” vs. “sharp,” or “shooting” vs. “stabbing.” Using specific adjectives like these can help us convey our experiences more clearly.

I often use the word “aching” to describe my arthritic pain. I discuss pain in my legs, which often manifests as spasms, with words like “heavy” and “throbbing.” “Heaviness” is a word I use when articulating my chest pain and tightness to my PH care team. Many of us with PH who experience chest pain liken it to an elephant sitting on our chests.

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How I use a multifaceted approach to chronic pain management

What’s your number?

Beyond adjectives, we also must use the infamous pain scale chart. If you’ve ever been admitted to the hospital, you were probably asked about your pain level, perhaps as often as three times a day or more. The dreaded pain scale chart is commonly displayed on a dry-erase board.

The pain scale is also common during regular appointments with healthcare providers. “What’s your pain level, with a 10 being the worst pain ever?” they’ll ask.

Using a pain scale from 1 to 10 can be frustrating, as picking numbers to describe pain might not capture its full complexity. Adjectives can provide a better description, in my opinion, because different types of pain can share the same number. For instance, one day, my pain might be a 7 out of 10, feeling dull and achy. It might be the same number the next day, but it’ll feel heavy and tight.

Also, how do we discern if numbers mean the same thing to everyone? Some hospitals and clinics use descriptive words with graphics alongside the numerical pain scale, but even then, I’ve seen different descriptions for the same number. Also, “mild” pain, for example, might be a 4 in some places and a 2 elsewhere.

As you can imagine, describing chronic pain to our medical teams is confusing and far from standardized. Each person perceives pain differently, and some of us have a higher pain tolerance than others. I’ve learned to compare my pain with what it was the last time I felt it.

Find what works best for you and your healthcare team. If your chronic pain flares up, it’s a good time to talk to your pain management team about medications as well as nondrug options. I meticulously track my pain, including when it happens, and what intensity it is.

Despite the complexity and stigma associated with chronic pain, it’s best to ask for help before it becomes too intense, which makes it harder to control. Reach out to your healthcare team and tackle chronic pain together!


Note: Pulmonary Hypertension News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Hypertension News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to pulmonary hypertension.

Comments

Cris Dingman avatar

Cris Dingman

Ah, the (dreaded) pain scale. The RA office uses that and it is SO confusing. Some days are better, some days are worse. It can even change hourly. And that’s JUST for RA. Now we’ll talk about PAH? RA is always worse in the morning until I take my meds. PAH pain isn’t normally there all the time, just when I overdo it. Should I give them an average pain level for the last couple days or does it really matter while sitting in the docs office?

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Jen Cueva avatar

Jen Cueva

Hi Cris, it sounds like you, too are familiar yet dread that darn pain scale. You make another critical point, if we are only talking about things like PH or other health conditions like RA. Usually i've found offering my worse pain of the week and the lowest or least amount of pain that week helps. That's what my pain management doctor usually inquires about.

A great idea, ask your rheumatologist if they are talking about RA specific pain or all body pains. Because each HCP most often has their own little systems. You'll have to come back and let me know here or in the PH News forums what answer you get. Just know, not all of our doctors use the same protocols.

Thanks for taking the time to read this column and also leaving your feedback. You aren't alone in this, my PHriend.

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Diane Roger avatar

Diane Roger

Thank you Jen....your column is very interesting and insightful to me as a newly diagnosed PH patient.

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Jen Cueva avatar

Jen Cueva

Hi Diana, I am so grateful that my column is helpful for you. I am sorry about your new diagnosis of PH. If you haven't yet joined us in the forums, I'll share the link below for you to join.It would be wonderful to have you there to connect with others in the PH community. I'm also one of the forum moderators, so come join us, my PHriend.

Join the PH News forums

Thanks so much for not only taking the time to read my column, but also feeling compelled to leave a comment. Hope to see you in the PH forums soon, my PHriend.

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Carol Volckmann avatar

Carol Volckmann

Jen, the subject of how to describe pain just came up this morning with my husband. 1 to 10 scale just doesn't work and how do I describe pain that I have lived with for years and so much of the time I am so use to it I don't feel it is really bad until it is off the charts. Thank you for bringing this up. I will try to use better adjectives when asked.

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Jen Cueva avatar

Jen Cueva

Hi Carol, thanks so much for taking the time to read my column. It's challenging when we have been dealing with certain pain so ,long, you're right, it can be off that chart! There's not a right answer either, because everyone wants to use their preferred scales.

Was the pain description conversation come up about your pain or your loving husband's pain? Either way, I hope and pray this week you both have manageable pain if any at all.

Again, it means the world to me to know that my columns are helping others. Take care, my PHriend!

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