The waiting period between hearing from your family doctor you might have rheumatoid arthritis (RA) and seeing a rheumatologist for the first time can be difficult. You might be coping with anxiety about possibly having a chronic illness, trying to manage your symptoms, feeling frustrated at the wait time, and worrying about what will happen when the day of your appointment finally arrives. It’s easy to feel helpless in this situation; as if like nothing is in your control. And though that is true to an extent (after all, you can’t control what’s happening in your body or the health care system), there are steps you can take during the waiting period to prepare for your first visit with the rheumatologist, which can make it a more successful appointment and help build a relationship with your new doctor.
First, a few things to keep in mind as you endure the waiting game. The first appointment with a rheumatologist usually lasts one to two hours. Future appointments won’t be as long, but your rheumatologist is trying to get to know you and your medical history during that first visit. They will discuss the symptoms that brought you to the office, ask about your medical history, and perform a physical exam. Sometimes, this is enough to enable the doctor to make a diagnosis. At other times, more tests, such as ultrasound scans and blood tests, may be needed.
To make this process go smoother and to help ease your fears, here are some things you can do to prepare for your first appointment with a rheumatologist.
Record your symptoms
When referring you to a rheumatologist, your family doctor will include the results of any tests they ordered. But test results can only provide so much information. “It certainly helps if the patient has additional information, especially about symptoms,” says Felix Leung, MD, a Toronto-based rheumatologist.
Although writing down your symptoms is a good start, you should also track your symptoms’ intensity and duration. This can help your rheumatologist identify any patterns that would help lead to a diagnosis. Dr. Leung recommends noting the location of any pain, if there is any swelling or stiffness, and if the symptoms occur at a particular time of day (for example, is the pain worse in the morning or at night?).
You can track symptoms in a notebook, on your computer, or in a symptom tracker app on your phone. Consider downloading ArthritisPower, an app that allows you to track your symptoms and can create a report to share with the rheumatologist. (If you don’t use an app, you may want to include a summary of what you’ve been experiencing during the waiting period.)
Including photographic evidence can also be useful, as rheumatoid arthritis symptoms can come and go, and may not always be present at an appointment.
“Sometimes I see someone in the office and they have no swollen joints, but their pictures show obviously swollen joints. That can be the difference in making a diagnosis quicker,” Dr. Leung says. Taking photos of swelling or other visible symptoms when they happen gives your doctor valuable information.
Document your medical history
Providing your medical history on the spot can be a long, nerve-wracking process that depends on your ability to remember a lot of events and medication from the past. This can be made much easier if you write down your medical history in advance.
When writing your medical history, keep it simple and organized. Consider making it a bulleted list that is divided into categories, such as current doctors with contact information, existing conditions and diagnoses, past surgeries, current medications with dose information, and any drug allergies. The medication list is especially important, says Dr. Leung, as certain arthritis medications can react negatively or be less effective when combined with other medications.
I suggest tracking your medical history in a Word or Google Document, so you can easily update it whenever anything changes. Then, when it’s time to see a new doctor, you simply print out a copy for them. I’ve been doing this myself for years and doctors are usually grateful for the help. Having the document allows them to quickly read it, ask questions on specific items of interest, and then move on to the meat of the appointment: talking about your arthritis symptoms.
Determine your questions — and try to find some answers
Chances are that you will have a long list of questions, but there may not be enough time to address all of them in that first appointment. Look over your list, and do some research to see what you can learn on your own. Make sure to use credible websites that offer science-based, expert-backed facts, such as CreakyJoints or the Arthritis Society.
Once you’ve narrowed down your questions, print out two copies — one for the doctor and one for you that includes space for notes.
Enlist some support
It’s natural for you to be a bit anxious about a medical appointment, so you may want to ask a family member or friend to come with you. Not only can they provide emotional support, but they can serve as a notetaker or interpreter if you are more fluent in a language other than English. Make sure it is clear that, as the patient, you are the leader in the conversation, and your support person’s role is limited to holding your hand, giving a nudge if you forget to ask a question, and taking notes.
If you’re going alone, you can also ask the doctor for permission to record the appointment so you can listen to it later and make sure you didn’t miss any important information.
Begin the new relationship
Creating a good relationship with your future rheumatologist works best if you try to be as friendly and patient as you’d want your doctor to be. It also helps to arrive with the intention that you will take the lead in making decisions. “My job isn’t to dictate what must be done, but to guide the process to the common goals of improved symptoms and prevention of functional impairment and disability,” Dr. Leung says. After all, it’s your life and you decide how you want to live it.
Treating your first appointment with a rheumatologist (or any doctor) as a meeting for which you need to prepare can help you get the most out of the visit. Bringing a summary of your medical and symptom information helps the time with the rheumatologist be focused and effective, as well as help you feel more like a full partner in the process.
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