Community Views: Psoriatic Arthritis and the Pain Scale
One of the most common tools that doctors use to assess the severity of psoriatic arthritis is the pain scale. This tool asks patients to rate each area of pain in their body with a number. It may work for doctors, but it gets mixed reviews from the members of the Psoriatic-Arthritis.com Facebook community.
What do those with PsA think about the pain scale?
To find out more about your experience with this tool, we reached out on the Psoriatic-Arthritis.com Facebook page and asked, “Does your rheumatologist ask you to rate your pain? Do you find this helpful or frustrating?”
We saw responses from almost 100 members of the psoriatic arthritis community. Here is what was shared:
Questions about timing are frustrating
One of the most common complaints about the pain scale is that it only takes into account a short period of time leading up to your appointment with your doctors. The pain scale questions may only refer to the last week or month, but it is likely that several months have passed between appointments.
Typically, a patient may want to discuss that entire window of time, which the questions do not allow for.
“It is so frustrating because they ask, ‘In the last week, rate your pain level or ability to do tasks.’ Last week might not have been the worst week in the last 3 months since we spoke. Sheesh.”
“Totally useless! Of course, it depends on how you are feeling at the moment!”
“Frustrating because it asks about ‘today/past week/past month,’ but I am 3 months between appointments.”
Hard to describe the locations in the body of all the pain
The pain of psoriatic arthritis often moves between parts of the body, sometimes quickly and sometimes slowly. Because the pain moves around, it can be very difficult to answer these questions. Describing the pain in specific parts of the body can be frustrating.
“It is frustrating since the pain is sometimes all over and other times more acute in some areas. Plus, I definitely think we all experience pain differently since we live with it every day. A scale is outdated.”
“I point to the joints I have constant pain in, then sometimes pain in, then rarely pain in. I describe the pain. That is the best I can do.”
“If I sat there and went over every spot I hurt and the number we would be there all day.”
“I find it no help when someone asks if I am still having pain in the right shoulder. Because then the pain could have moved to the left shoulder and right knee. They should know this pain moves around.”
It is hard to explain the amount of pain
For many people with psoriatic arthritis, it can be hard to assign a number to what you are feeling. Moreover, giving a number to the pain you feel is subjective. One person’s 4 may be another person’s 6.
“I hate the pain scale. Trying to explain your pain is difficult, and then to try to quantify it on a chart I feel is horrible. I just tell my doctor my pain is severe, moderate, or low and try to explain what hurts where and so on.”
“Giving a general number is hard.”
Need a holistic approach
A handful of people found that the pain scale is not helpful. Instead, they would prefer a tool they could use to log more information about their pain over a longer period of time, as opposed to only reporting the pain that shows up right before a doctor’s appointment.
“Is there an app which we could use daily or hourly, which could download analysis over a period of time (months and years) to give a better picture to healthcare professionals, especially when pain meds taken are analyzed alongside.”
“I fill in an online questionnaire now that is much more detailed. It asks you to rate real-life scenarios, such as can you hold up an umbrella. It is much more useful, and I think that when you finish it automatically sends your answers to your rheumatologist.”
It is helpful
For some people in the community, a pain scale is a helpful tool. They find that it is a good way to track whether their medicine is working. It can also be a positive reminder of how much progress they have made on their journey.
“Helpful. I give her a sliding scale type of rating of 1-10, which helps determine if we need to bump up my meds or not.”
“Yes, I have always been asked my pain score. I think it is an important source of data. I have never had any objections in answering it, even when I was a child. I also think it helps us as patients to see how far we have come or not. Especially important if I am feeling despondent.”
Pain scales can also help doctors make an accurate diagnosis, create a treatment plan, and measure the effectiveness of treatment. But this is just one way to do that. There are many ways to keep track of symptoms and chronic pain, including journaling, photo diaries, and phone applications.
What is important is that you find what works for you within your pain management plan. We want to say thank you to everyone who contributed to this story. We appreciate you.
Will you help others by taking our Psoriatic Arthritis In America survey?