Everything You Need to Know for Your Rheumatology Appointment

Whether you already have an appointment scheduled to see a rheumatologist, or you or your primary care physician are deciding whether you should schedule an appointment to see a rheumatologist, preparing for your appointment can be overwhelming and daunting. This article will share information and insight into how to make the most of your rheumatologist appointments, including important questions to ask.

What does a rheumatologist do?

A rheumatologist is a type of doctor called a specialist. Unlike a generalist — like a primary care physician (PCP) or general practitioner (GP) — who has a broad knowledge of a variety of health conditions, a rheumatology specialist focuses on a specific set of health conditions. A rheumatologist specializes in arthritis and rheumatic diseases, meaning they are able to diagnose, manage, and treat rheumatological diseases.

What health conditions does a rheumatologist treat?

Rheumatic diseases, sometimes called musculoskeletal diseases, are diseases that affect the joints, muscles, connective tissues (i.e., ligaments and tendons), and bones. The most common types of rheumatic diseases include:

• Ankylosing spondylitis
• Arthritis
• Childhood/juvenile arthritis
• Fibromyalgia
• Gout
• Osteoarthritis
• Osteoporosis
• Psoriasis
• Psoriatic arthritis
• Rheumatoid arthritis (RA)
• Systemic lupus erythematosus (Lupus)

Most rheumatic diseases are considered either autoinflammatory diseases or autoimmune diseases. To understand the difference between autoinflammatory and autoimmune diseases, we first need to talk about the immune system. Your immune system protects your body against disease and infection by responding to foreign pathogens, like bacteria and viruses, that could make you sick.

Your immune system is made up of two subsystems: the innate immune system and the adaptive immune system, which work together and determine how your body responds to foreign pathogens. Here’s how the two subsystems work:

Innate immune system: Your innate immune system, sometimes called the “nonspecific” immune system, is considered your body’s first line of defense against all pathogens and responds the same way to all pathogens entering your body.

Adaptive immune system: Your adaptive immune system, sometimes called the “specific” immune system, adapts over time to respond to specific pathogens faster, which can help your body form immunity to certain infections.

In autoinflammatory diseases, your innate immune system accidentally responds when there are no foreign pathogens present in your body. In autoimmune diseases, your adaptive immune system mistakes your own healthy cells and tissues for foreign pathogens that could make you sick, and attacks them.

Both autoinflammatory diseases and autoimmune diseases cause your immune system to attack your joints, muscles, tissues, bones, or organs — resulting in inflammation and other related symptoms, which may include:

• Abdominal pain or bloating
• Dry or itching skin
• Digestive problems (such as constipation and nausea)
• Dizziness or feeling lightheaded
• Fatigue
• Fever
• Headaches or migraine
• Joint pain or stiffness
• Muscle aches, pains, or weakness
• Skin problems (such as rash)
• Sleep problems (such as insomnia)
• Swelling in the joints and other parts of the body
• Temperature sensitivity

When should I see a rheumatologist?

There are many reasons to see a rheumatologist for the first time. If you or your primary care physician suspect that you may be living with a type of arthritis or type of rheumatic disease, or your family has a history of rheumatic diseases, chances are the next step is to see a rheumatologist. Or, if you experience any joint or muscle pain that does not resolve, it may be time to schedule an appointment with a rheumatologist.

If you have already received a diagnosis, you may seek out a rheumatologist when you are looking for support managing or treating your condition.

How do I find a rheumatologist?

If you are seeing a rheumatologist for the first time, the best place to start is a referral list from your primary care physician. This referral list will likely contain rheumatologists that your primary care physician has already partnered with, and can work closely with to manage your individual care.

You may also need a referral from your primary care physician if your health insurance requires it. If your primary care physician has not already provided a referral, you can obtain one by putting in a referral request.

While you are looking at your health insurance benefits, you can also get an idea of how much it costs for you to see a specialist. Many insurance companies have a “specialist” copay listed on their insurance benefit cards or website. You can also check that the rheumatologist you are considering is in-network, which can help cut down on any surprises, like out-of-network charges or lack of insurance coverage for your appointment.

In addition to asking your primary care physician for recommendations, you can ask loved ones for recommendations, or use the American College of Rheumatology’s provider directory here.

What should I do to prepare for my first rheumatologist appointment?

If you suspect you may be living with a rheumatic disease, you likely already know that they can take longer to diagnose than other health conditions. This is because most rheumatic diseases have similar symptoms to one another, and have similar symptoms to other health conditions.

No single test can diagnose a rheumatic disease, so your rheumatologist may conduct a blood test, such as an antinuclear antibody test (ANA) or complete blood count (CBC), or an imaging test, such as an ultrasound, MRI scan, or X-ray to detect inflammation.

If you are seeing a rheumatologist for the first time, they will want to discuss your symptoms and your family’s medical history. It may be helpful to create a one-pager for your rheumatologist. If you don’t know what information to include, here are a few ideas:

• A detailed list of any symptoms you are experiencing, including their severity, how long you have been experiencing them, and if anything “triggers” your symptoms.
• A record of any other health conditions you have been diagnosed with.
• A record of your family’s medical history, including if there is a history of rheumatic diseases in your family.
• A list of medications you are currently taking, as well as any medications you have tried in the past to manage your symptoms.

In addition to this one-pager, you will want to think about any questions you will have for your rheumatologist. Here are a few to consider:

• Do my experiences, signs, and symptoms sound like a rheumatic disease?
• What test(s) would help make a diagnosis, or rule out other health conditions?
• What treatments, lifestyle changes, or modifications might help me feel better?
• What are my rheumatology treatment options, based on my symptoms and progression?
• What can I expect when I start treatment? What are the side effects?
• What new signs or symptoms should I look out for?
• What happens if I don’t improve? When should we try something else?

It can be challenging to advocate for yourself in your doctor’s appointments, so if you would feel more comfortable having someone there to support you — or serve as your advocate — you can always bring a trusted friend, partner, or relative with you to your appointment. Sometimes, it can be difficult to retain all the information a doctor shares with you, so it can be helpful to have someone there who may be less nervous and better able to take notes or hold onto information at that time.

On the day of your appointment, you’ll want to wear something comfortable. The rheumatologist may want to complete a physical exam on your joints during the appointment, so wearing loose clothing that can easily be pushed up past your knees or elbows may help. If the rheumatologist requests an imaging test, such as an ultrasound or MRI scan, you may be asked to wear a hospital gown.

Going to a rheumatologist for the first time might seem intimidating, but by giving yourself plenty of time to prepare, you’ll have a smoother experience and will hopefully be able to save yourself some stress when the day of your appointment arrives. You’ve got this!