Katie Roberts, a PsA patient and an advocacy ambassador for Maryland’s local chapter of the Arthritis Foundation, says she sometimes gets stressed out while having to put how she has been feeling into words: “Sometimes I have anxiety when I’m sitting in the doctor’s office and the doctor is like, ‘Where’s the pain?’ And I’m like, ‘In my elbow.’ And he’s like, ‘Well is it on the top of your elbow? Is it on the inside of the elbow?’” she explains. Roberts also notes that another challenge can be that she may not be experiencing pain at the time of her appointment, which can make explaining what has happened in the past even more challenging. So how can you properly tell your doctor what is going on and explain your psoriatic arthritis pain in a way that they understand? We caught up with a few psoriatic arthritis patients and doctors that treat them to get their best tips.
Don’t downplay your pain
Meredith Amoroso, a 38-year-old psoriatic arthritis patient in Pittsburgh, initially began having psoriatic arthritis symptoms in her 20s, but at the time, she didn’t feel like she fit the stereotype and therefore she downplayed her pain level. “I was an athlete, I looked like a healthy, young 20 something college student. And so I went into the doctors almost embarrassed of my pain level,” she recalls. She ended up telling doctors her pain was more of a 6 or 7 out of 10 when in fact, she says it was more like a 9 or 10. This led to a delay in Amoroso getting properly diagnosed. Thus, her advice for others is to “be incredibly straightforward and honest” about how you are feeling.
Don’t just talk about your pain in the moment
Another tip, per Amoroso, is to not just focus on the pain you’re feeling at the time that you’re in your doctor’s office. “Because you might have had a really good morning. You might have taken Advil that morning. You might have been moving your body more than you usually do,” she says. “And I think it’s important to not just say, ‘OK, right now I’m at a 3 or 4 out of 10 but actually when I woke up this morning, I really had trouble moving my neck and I was at a 10.”
Be extremely descriptive of your pain
Instead of saying “my neck hurts,” try to dig deeper and tell your physician when you are specifically noticing this pain—and if it’s causing any limitations to your everyday activities. I make sure to tell my doctor things like, “If I’m in the car for a long time, turning my neck a degree or two to the left was so painful that I couldn’t check my blind spot,” says Amoroso. “And that was a really descriptive way for me to tell him, ‘Hey, I literally can’t even turn my neck to the left.’” She suggests finding the real moments in your life where the pain is present and describing it in that context.
Keep a pain journal
Writing down your symptoms and taking notes about when they occurred can be helpful in being able to clearly present this information your doctor. “If I know I have a doctor’s appointment coming up, I like to keep a journal about a week ahead of time,” says Roberts. “I really think about what it is that might make the pain worse or what I’m doing when I have the pain,” she explains, noting that in her experience, it’s been very helpful for her to be able to share this with her doctor.
Use a pain questionnaire
The Arthritis Foundation has a printable pain questionnaire that you can fill out and take to your doctor’s office with you. It asks you questions like:
Where is your pain located?How often do you feel pain?How long does your pain last?Which activities do you have trouble doing or are unable to do?What relieves your pain?
This information can be useful in helping your physician to understand what discomfort you may be feeling. You can access the questionnaire here.
Make the pain conversation a two-way street
This is another trick that Roberts swears by: “I will go in and I say, ‘Hey. I’m having pain in my elbow. It hurts when I do this, this and this. I also have psoriatic arthritis. What are some things that I need to pay attention to? What sorts of things do I need to keep an eye out for? When can I report back to you as I start to see these symptoms?’” she shares. She finds that turning the conversation into a back and forth dialogue where she describes her pain to her physician and then asks questions to get his opinion has really helped her better communicate her pain levels. Roberts suggests also asking, “What other things can I document? What other information would be helpful for you to help diagnose me?”
Build up the doctor/patient relationship
Being able to open up to your doctor about how you are feeling is key. And a big part of doing that, says Alison Winaker, a 36-year-old elementary school teacher and psoriatic arthritis patient, is finding a doctor you are comfortable with and creating a trusting relationship. “Because I’ve had a relationship with my doctor for a long time, she kind of understands my threshold of pain,” she says. And Winaker and her physician have gotten into a flow of how and when Winaker will reach out with pain questions and updates. “So I’m not going to contact her because I’m having a bad day and my knee feels a little stiff,” she explains. “My doctor knows that when I finally call or email, that I’m at the point where I need fluid drained off my knee or I possibly need a steroid packet to help me get through,” she says. “So through building a relationship and being consistent with my appointments with her, she’s gotten to know me as a patient.”
Make sure to share all of your symptoms, beyond joint pain
Dr. Norman B. Gaylis, a rheumatologist in Aventura, Florida, notes that psoriatic arthritis can be more challenging to diagnose, as there is not a specific blood test to detect it, like there is with rheumatoid arthritis, where you’re looking for a positive rheumatoid factor or Lupus, which can present with a positive ANA. But certain factors like swollen toes or certain knuckles, he says, can help point him in the right direction of a PsA diagnosis. Amoroso agrees, revealing that she was diagnosed through a mangled fingernail. “Tell them all of your symptoms, not just symptoms of your pain level, because you might have a symptom that you think is completely unrelated, like my thumbnail, that, in fact, is a telltale sign,” she says. “I would have never in a million years thought my ugly thumbnail could be the reason I was finally appropriately diagnosed, but it is because a good rheumatologist happened to ask to see my hand.” So per Amoroso, don’t hold back. The more information and data that you can give to the physicians, the better they’ll be able to properly diagnose you.
Ask your doctor to clarify the “1 to 10” scale
Most doctors will ask you to rate your pain on a scale of 1 to 10, but psoriatic arthritis patients—and patients in general—will tell you that task is easier said than done. “Every doctor I’ve encountered, that’s exactly how they say it,” says Amoroso. “Or there are some doctors that even literally have a smiley face chart on the wall—and I’m like, ‘I’m the frowny face!’” she adds, noting that it’s so hard to know “What the heck is a 10?” But one way to make this a little easier is to ask your doctor for examples of related symptoms that would fall into a 1 or 10 category. So if they can tell you that neck pain would be a 3 and pain in your knee that keeps you from being able to walk across the room could be a 7, that can better help you figure out where your pain level can fit in. Next up: It’s Psoriatic Arthritis Awareness Month! Learn the Differences Between Rheumatoid and Psoriatic Arthritis Sources: Contessa Benson, a 54-year-old psoriatic arthritic patient in Winnipeg Katie Roberts, a PsA patient and an advocacy ambassador of Maryland’s local chapter of the Arthritis Foundation Meredith Amoroso, a 38-year-old psoriatic arthritis patient in Pittsburgh Alison Winaker, a 36-year-old elementary school teacher and psoriatic arthritis patient Dr. Norman B. Gaylis, a rheumatologist in Aventura, Florida
