Preparing for an appointment with your rheumatoid arthritis doctor is necessary for getting the best possible treatment. Without proper care, the condition can make it difficult for you to get out of bed, perform household chores, or go to work.
Rheumatoid arthritis causes pain, swelling, and stiffness in your joints, particularly in the hands and wrists, according to the U.S. National Library of Medicine. There’s no cure, but you can achieve remission, a period where your symptoms minimally affect your ability to do everyday tasks. To get there, many people work with a rheumatologist or a primary care doctor to find the best medications and lifestyle changes that reduce their symptoms. Regardless of the type of physician you see, however, you’ll want to find someone who listens to your concerns, according to Jonathan M. Greer, M.D., a rheumatologist with JFK Medical Center in Atlantis, Florida, and a medical adviser to CreakyJoints, a nonprofit research and advocacy organization for people with arthritis.
“Rheumatoid arthritis is a lifelong disease, so it’s important that the patient realizes this is serious and finds someone they can connect with and work with,” Dr. Greer tells SELF. “It’s a two-way street and patients are part of the process in terms of decision-making and managing their condition.”
The more your doctor knows about your specific concerns, symptoms, and lifestyle, the better they can help you develop a treatment plan that fits your preferences and enables you to resume some of your favorite activities to the best of your ability. Taking time to think through all of this before your appointment can help you communicate with your doctor, according to Jemima Albayda, M.D., assistant professor of medicine in the division of rheumatology at Johns Hopkins University School of Medicine. “Some people just kind of show up and wing it in a sense, but could they get more out of it? Absolutely,” she tells SELF.
Here are five ways to make your next appointment with a rheumatoid arthritis doctor more informative.
1. Start a rheumatoid arthritis journal.
It’s difficult to remember the nitty-gritty of how you feel, what you eat, and all of your medications—which is why Dr. Albayda recommends tracking your symptoms and habits. Doing so can help you evaluate your emotional state, identify rheumatoid arthritis triggers, and determine if certain care methods and medications are working.
Here are a few things to include in your journal:
- How often you experience flare-ups or symptoms such as joint pain, stiffness, and swelling. Be as detailed as you can when describing the pain and location so your doctor can help you think through pain-relieving strategies.
- What you eat and drink.
- Your exercise routine, including how often you work out, the type of activity you do, and how you feel after.
- How regularly you smoke and drink alcohol.
- Your emotional health, including how often you feel stressed, depressed, or anxious.
Dr. Albayda says she wishes more patients discussed their mental health during appointments. If you’re too depressed to talk to your friends because you’re always in pain, then your doctor needs to understand how severely the condition affects your quality of life. They can help you explore therapy options and refer you to someone in your insurance network. (If you don’t have insurance, there are some more affordable reduced-fee options.) “Doctors can’t compartmentalize things and say, ‘Oh, I’m only dealing with your joints,’” Dr. Albayda says. “Rheumatoid arthritis is a systemic disease and impacts you in functional ways and emotionally.” Keeping a journal may help you identify patterns of depression in addition to detecting some less well-known rheumatoid arthritis symptoms such as eye pain and redness, says Dr. Albayda. A few of her patients thought they developed pink eye when in reality their eye tissue was inflamed due to rheumatoid arthritis, which “can be pretty serious,” Dr. Albayda says. In that situation, you may need to see an ophthalmologist who can properly evaluate your situation and prescribe treatment, she explains.
2. Do your research using credible sources.
You may have questions about rheumatoid arthritis in between your medical appointments or want to read about how other people manage their symptoms. It’s only natural to turn to online resources, such as message boards, Facebook support groups, and blogs for information. However, it’s best to also visit known reliable organizations to ensure you’re reading evidence-based advice, says Laura Christine Cappelli, M.D., M.H.S., M.S., assistant professor of medicine at Johns Hopkins University School of Medicine. She recommends visiting the American College of Rheumatology website to learn more about the condition and treatment options. Dr. Greer says the Arthritis Foundation website is another good resource.
That’s not to say that support groups can’t be helpful. Many people enjoy the camaraderie that comes with talking to other people who may understand some of your challenges. However, you’ll want to double-check the information you find in these groups against reputable sources, such as the Mayo Clinic. Additionally, Dr. Cappelli recommends printing out articles you read and writing down the advice you find online, and bringing that information to your doctor’s appointment. This allows you to discuss things like why you think a particular remedy may or may not work for you. “We want patients to feel empowered and to look for their own information,” Dr. Cappelli tells SELF. “But always feel like you can come to your doctor to discuss outside information to determine whether it’s accurate and relevant,” she says.
3. Bring a list of talking points.
Reading about rheumatoid arthritis may naturally spark some questions. Dr. Albayda says she appreciates when patients ask things like, “I’ve been experiencing a certain symptom. How do I cope with this?” Here are some other questions that can prompt an informative discussion with your clinician:
- How advanced is my case of rheumatoid arthritis?
- What lifestyle changes will make it easier to manage my condition?
- How often should I schedule follow-up visits?
- What treatment do you think is best for me?
- What are the common side effects of that particular treatment?
- How long until my treatment starts working?
- What activities can I resume with treatment?
It’s especially helpful to ask your doctor about your long-term prognosis, says Dr. Cappelli. “I think people are always better equipped with knowledge and expectations,” he says. “I think often the rheumatologist will bring those things up themselves, but it’s a good idea for a patient to ask those sorts of questions, even if they’re scared of what the answer might be.”
4. Be clear about your goals for treatment.
Your dream of opening a bakery may seem unrelated to your medical condition, but that’s definitely a consideration for personalizing your treatment plan.
“It’s important for a doctor to get a sense of who you are and what physical activities are important to you. Not just for leisure, but also to function at your job or take care of your family at home because those are real, concrete things we can work on together,” Dr. Cappelli says. For example, chefs use their hands to chop, stir, and lift heavy cookware for hours, all of which can be difficult to do when your joints are stiff. Your doctor may prescribe medication to reduce flare-ups and offer useful recommendations about how to make your workplace more accommodating by using ergonomic tools or other modifications.
Similarly, it’s helpful to think through any physical achievements that are important to you. “If I have a patient who’s a runner who can no longer run, I want to know how their rheumatoid arthritis has affected them and their goals,” Dr. Cappelli says. In addition to prescribing medication, she might refer patients to a physical therapist who specializes in working with runners or people with arthritis.
Although you may not be able to do everything exactly the way you did prior to your diagnosis, your doctor can help you determine what’s realistic.
5. Bring information about your medications to your appointment.
Dr. Cappelli finds it helpful when patients bring in their pill bottles to ensure that she knows exactly what they’re taking. Some medications (including over-the-counter drugs) can cause potentially serious side effects when taken together, so your doctor will want to know about everything you use, including supplements, OTC medications, and prescriptions that you take for other medical conditions. If you can’t bring the actual medications, consider taking photos of each pill bottle instead. You can also record all of the relevant information about each medication in your rheumatoid arthritis journal and bring that to your appointment.
It’s important to let your doctor know about all medications you’re taking—not just ones related to your rheumatoid arthritis—and any other health conditions you have. “We want to make sure they’re part of your medical record because that might affect how we treat your rheumatoid arthritis and what medications we choose in the future,” Dr. Cappelli tells SELF.
Sometimes, people with certain medical conditions experience serious side effects when taking a particular drug. For example, your rheumatoid arthritis doctor needs to know if you have high blood pressure because some corticosteroids (a steroid that lowers inflammation) can increase your blood pressure. In that situation, you may start with a lower dose of the medication or take something else entirely.
With a little bit of preparation, you can develop a better rapport with your doctor and work together on a treatment plan that helps you feel your best.
Related:
- The Rheumatoid Arthritis Self-Care Kit
- This Is What Rheumatoid Arthritis Remission Really Feels Like
- 10 Little Life Hacks People With Rheumatoid Arthritis Swear By