A patient’s perspective on what to expect at your first rheumatology appointment

Your first visit with a rheumatologist can feel daunting, especially if you've waited a long time for it to happen. 

One way to look at your first appointment is the beginning of a partnership. You know your body best and bring your story, while the rheumatologist brings their specialist knowledge and expertise. 

From a patient’s perspective, here are a few things that can help you prepare and make the most of that first appointment. 

Your story matters. It helps paint a picture for the rheumatologist, so think about when your symptoms began, where they are, what they feel like, what makes them better or worse, and how they are affecting your everyday life.

You don’t need to remember it all. Keeping some notes beforehand can make it easier. 

Jot down what you’ve been experiencing – including pain, stiffness, swelling or fatigue – and anything you’ve noticed that makes your symptoms better or worse.

Include prescription medicines, medicines you buy yourself, vitamins, supplements and herbal or natural remedies. If you’re not sure of a name or dose, you could take the packet or a photo of the label with you.

Appointments can go quickly, and it’s easy to forget what you wanted to ask once you’re there. You don’t need a long list, just think about what’s most important to you.

If you have relevant blood test results, imaging or letters from other specialists that you’ve been asked to bring, have those ready too.

You may also want to take a trusted support person. They can be another set of ears, help take notes, or simply be there for support. 

Before you go, think about the one thing you really want your rheumatologist to understand about how your symptoms are affecting you.

It might not be about pain at all. Perhaps you’re struggling with fatigue, can’t manage a full day at work, aren’t sleeping well, or have stopped doing something you love.

You know what has changed in your life – and that’s an important part of your story. 

At your first appointment, the rheumatologist will want to build a picture of what has been happening.

They may ask about your symptoms, family history, other health conditions, previous tests or treatments and how your symptoms affect your day-to-day life.

There may also be a physical examination. This could include looking at your joints for swelling or tenderness and checking how they move.

The rheumatologist may review previous blood tests or imaging, arrange further tests if needed, and talk with you about what they think may be happening and what the next steps could be.

Don’t be afraid to ask if there’s something you don’t understand. It’s your appointment, and it’s okay to ask someone to explain something again. 

You may leave your first appointment with a clearer idea of what’s happening, or you may still have questions.

That’s not unusual. Rheumatology conditions can be complex, and sometimes reaching a diagnosis takes time. Your rheumatologist may need further blood tests or imaging, or need to see how your symptoms change over time. 

• Do I need any further tests?
• How and when will I receive my results?
• Do I need another appointment and how do I make that appointment?
• Is there anything I should keep track of between appointments?
• Who should I contact if I have questions or my symptoms change?
• Keep using your symptom diary if it’s helpful. It can give you something concrete to take back to your next appointment rather than trying to remember what happened over several weeks or months. 

Most importantly, your story matters

You don’t need to know all the medical terms or have everything perfectly organised.

You are the expert in what it feels like to live in your body.

Tell your rheumatologist what’s been happening, what has changed, how it’s affecting your life and what matters to you.

And if you walk away from your appointment and realise there was something you forgot to ask, that’s okay too. 

If you would like some help preparing for a rheumatology appointment, understanding information you’ve been given, or working out what questions you might want to ask next, our Arthritis Assist team is here to support you.

Arthritis Assist
Email or call the Arthritis Assist team on 0800 663 463, or fill in your details and leave us a message through this link: Contact us.