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If you have rheumatoid arthritis and are experiencing flares or unexpected pain, figuring out what’s going on is not always easy.
Is your RA getting worse? Do you need a medication change? Is there another condition causing the pain? These issues can be even more difficult to manage right now, when you may be seeing your provider via a telehealth visit rather than in person because of the COVID-19 pandemic.
During a telehealth visit, your rheumatologist will examine you by using a video/audio service like FaceTime or Skype, or a specific telehealth app intended for this purpose.
While telehealth existed before the COVID-19 pandemic, it was not generally used in a mainstream way. Issues like privacy regulations and insurance reimbursement made it challenging for providers to widely adopt telehealth. Rheumatologists have also been hesitant because of the inability to do a physical exam, which includes touching the joints and assessing their range of motion.
However, necessity is the mother of invention. COVID-19 necessitated that rheumatologists start using telehealth for many different kinds of issues, from routine visits to acute concerns like RA pain. After a few months, rheumatologists are finding that a little creativity on their part and a lot of communication from patients can help overcome this limitation.
“Treating rheumatoid arthritis pain is really about guiding people to tease through the factors that are weaving into the thing they call pain,” says rheumatologist Grace C. Wright, MD, PhD, founder and president of the Association of Women in Rheumatology (AWIR). “I need to pick apart what’s behind the symptom,” she says, noting that there are differences when doing this in person compared with telehealth.
How Doctors Assess Rheumatoid Arthritis Pain During a Telehealth Visit
You may be surprised by what rheumatologists can assess from afar, especially if you have video with good resolution, says Leah Alon (Nichols), MD, a rheumatologist in New York City.
While your rheumatologist won’t be able to physically touch you, they can:
- Have you bring your joints to the camera (or angle the camera differently) to inspect for swelling
- Guide you to press (self-palpate) the joints to check for tenderness (pain)
- Assess mobility by asking you to make a fist or mimic like you’re writing, or just by observing how quickly you can reposition the phone during the visit.
They can also use the following RA disease activity measures to assess swollen/tender joint count, your level of difficulty performing everyday tasks and participating in social activities, your mental state (depression and/or anxiety), ability to sleep well, and pain level.
- Clinical Disease Activity Index (CDAI)
- Disease Activity Scale-28 (DAS28-ESR/CRP)
- Patient Activity Scale II (PAS-II)
- Routine Assessment of Patient Index Data 3 (RAPID3)
- Simple Disease Activity Index (SDAI)
Your provider likely has a preferred questionnaire and may ask you to fill this out before the telehealth visit, or you may fill it out together during the visit.
Similar to an in-person appointment, your rheumatologist will work with you to figure out what is causing your pain, says Dr. Wright. A new pain issue could be:
- Inflammatory (such as whether you’re having an RA flare)
- Mechanical (due to low back pain, carpal tunnel syndrome, muscles strains or sprains, tendonitis, or bursitis)
- From something else, such as fibromyalgia, depression, or lack of physical activity
Read more about causes of RA pain aside from inflammation.
“With rheumatoid arthritis, it’s the small joints in the hand, wrists, and feet, but it can also be larger joints like the knees, hips, and ankles if you’ve had long-term disease,” says rheumatologist Alvin F. Wells, MD, PhD, director of the Rheumatology and Immunotherapy Center in Franklin, Wisconsin. “Once I identity the peripheral joints, then we’ll talk about pain.”
To test for pain remotely, your rheumatologist may ask you to mimic some of the motions they would have performed on you during the in-person exam, notes Dr. Wells. For example: Imagine holding your hand up and flexing your wrist back like you’re going to touch the back of your arm with your fingers: Does it hurt? Or, make a motion like you’re going to lift up a pot of coffee: How does that feel?
“If a patient can’t make a fist or if they demonstrate that their grip strength is weak — can you hold a bag of groceries? — that’s a sign of active inflammation,” says Dr. Wells.
What to Tell Your Doctor During a Telehealth Visit About Your Pain
“Communication is particularly important in telemedicine because we can’t physically press on the joints,” says Angus Worthing, MD, a clinical assistant professor of medicine at Georgetown University Medical Center in Washington, D.C.
What does your rheumatologist want to know? Here are a few questions they may ask about your pain during a telehealth visit:
- Where is your pain?
- When did your pain start?
- What does your pain feel like?
- How would you rate your pain on a scale from 0 to 10?
- When do you have the most pain: in the morning, during the day, at night?
- Is there stiffness involved?
- Do you have any noticeably swollen or red joints?
- Which activities make your pain worse?
- Which activities does the pain preventing you from doing? (Can you open door knobs or open jars? Are you able to sleep?)
- How is your pain compared to your last visit?
- How do you feel in general? Are you more tired, stressed, or depressed?
- How are you feeling on your medication?
In addition, Dr. Wright says she’ll want to know your current activity level — and how quarantining may be affecting your pain:
- Are you leaving your home for anything?
- How much activity are you doing now compared to the beginning of the year?
- What are you doing to substitute for your usual exercise programs and physical therapy?
“Patients who quarantine strictly — everything is delivered, they don’t leave, there is no built-in exercise — are reporting more pain with the same amount of joint swelling and tenderness,” she says. “This can be a component of deconditioning and the mental fatigue of being isolated from quarantine.”
This is not the same pain that occurs when your joints flare due to inflammation, she notes.
Use this checklist to help you talk about your pain during your next telehealth visit.
When to Contact the Doctor — and When You Need an In-Person Visit
The bottom line is that you need to alert your doctor if you’re having pain. A telehealth video chat is a good first step.
“The virtual visit is the trigger,” says Dr. Wells. It helps the rheumatologist determine whether you may need an imaging or lab tests, or may need to change your medication dose or consider different medication options.
Dr. Wells says you should especially make a call (and, possibly, arrange an in-person visit or trip to the emergency department) if you experience any of these red flags:
- Your pain wakes you up at night
- Your pain prevents you from walking or moving
- You can’t put weight on your joints
In addition, you’ll need to come into the office if you have one swollen big joint (like a knee) all of sudden. “We’ll need to do a procedure and aspirate the joint to rule out infection,” says Dr. Alon.
Treatment Changes to Manage Your RA Pain
Whether or not your rheumatologist wants to change or adjust your medication after a telehealth visit may depend on the cause of your pain and the type of medications you take, as well as the individual physician’s and patient’s preferences.
If your pain is suspected to be due to inactivity, treatment may be as simple as moving more throughout the day. “For patients who are stuck in an apartment building [because of the coronavirus], or can’t leave because they are disabled, I have them put on a mask and gloves and walk the hallways,” say Dr. Wright.
She also recommends trying virtual physical therapy or online exercise classes and videos that you can modify to your capacity.
If you have multiple joints that are swollen because you’re having an RA flare, your rheumatologist may discuss switching you to, say, a different DMARD, increase your dose, or add another medication, says Dr. Alon. “If you have a mild flare, we might just do a steroid like prednisone.”
But if your pain is suspected to be due to a condition such as fibromyalgia or osteoarthritis, the treatment will be completely different.
“The biggest issue is to determine whether there are any other causes of pain,” says Dr. Wells.
The bottom line: The most important thing to remember about managing RA pain in a telehealth world is that it is manageable. Even if you’re unable to visit your rheumatologist for a touch-to-touch exam, you can work with them to identify and treat the underlying cause of your pain.
“It’s a really good option right now, especially for longtime patients,” says Dr. Alon. “You know them, they know you, they know their bodies and they’re at home, safe, and comfortable.”
- Rheumatoid Arthritis Pain and Flare-Ups: What to Know and Do
- 6 Causes of Rheumatoid Arthritis Pain Aside from Inflammation
- Rheumatoid Arthritis Pain: 7 Things You Should Tell Your Rheumatologist
- Rheumatoid Arthritis Pain: When to Consider a Medication Change
Track Your RA Pain with ArthritisPower
ArthritisPower is a patient-centered research registry for joint, bone, and inflammatory skin conditions like rheumatoid arthritis. You can select different health assessments that matter to you, and choose how often you want to take them. When you have an upcoming doctor appointment, you can discuss your latest assessments and feel more informed. Learn more and sign up here.
This article is part of A Patient’s Guide to Understanding Rheumatoid Arthritis Pain and was made possible by a grant from Sanofi Genzyme.
Interview with Alvin F. Wells, MD, PhD, rheumatologist and director of the Rheumatology and Immunotherapy Center in Franklin, Wisconsin
Interview with Angus Worthing, MD, rheumatologist and clinical assistant professor of medicine at Georgetown University Medical Center in Washington, D.C.
Interview with Grace C. Wright, MD, PhD, rheumatologist and founder and president of the Association of Women in Rheumatology (AWIR)
Interview with Leah Alon, MD, rheumatologist in New York City
Interview with Vinicius Domingues, MD, rheumatologist in Daytona Beach, Florida