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Two Decades of Writing. Sharing Helps Me Out

Time and time again, I get messages from readers asking me what they should ask at their first rheumatology appointment. I can’t tell you how many times I’ve written this out in private messages before deciding to copy my notes and post it here. My Several Worlds continues to be a source for patients in Asia who aren’t sure how to navigate foreign healthcare systems. They’re often overwhelmed and have no idea what to ask.

Have no fear because I’ve been through it many times with countless doctors. I’ve got this down to a science. I hope this guide to questions for your first rheumatology appointment helps you.

Be sure to read through to the bottom as this post includes several FREE resources for your appointments!

What Is A Rheumatologist?

Rheumatologists are specialist doctors that are experts in systemic autoimmune conditions which affect the musculoskeletal system. There are more than 100 autoimmune conditions. ‘Rheumies’ are trained to identify causes of autoimmune disease.

The journey to finding a diagnosis can take some time. Many patients start their first rheumatology appointment by outlining how they are feeling and what they are experiencing.

After you’ve outlined your symptoms, your appointment is typically followed up with laboratory tests and imaging tests. In Taiwan, autoimmune diagnoses don’t formally hit medical paperwork until a patient has experienced symptoms for at least three to six months. This is why it’s so important to be really specific during your appointments. I’ve had years go by without confirmation. As I got more used to working with rheumatologists, I was able to hone in on making the best of my time with appointments. My last diagnosis took three months to confirm specifically because I was super concise with my symptom tracker and medical notes.

I hope this guide helps you reach a diagnosis quicker!

Your doctor might determine that your symptoms warrant treatment right away.

This is what happened to me when I presented at Adventist Hospital in Taipei with bilateral knee joint swelling and swollen legs.

My rheumatologist immediately determined I had some form of autoimmune arthritis and started me on anti-inflammatories and painkillers right away. However, he didn’t know what kind of arthritis I had. He suspected I had Rheumatoid Arthritis, but couldn’t confirm it with what he saw at my first appointment. Thus I was sent for bloodwork and imaging tests after he drained fluid off my knees.

A few weeks later, I got my lab results back. I tested negative for RA-factor, but my blood was showing raised CRP and ESR levels. Imaging was showing fluid in my joints and inflammation in my spine and SI joints.

Based on the symptom list I had given him at my first appointment, he suspected I had something called Ankylosing Spondylitis, but they didn’t have any AS specialists at Adventist. He referred me to a specialist at National Taiwan University Hospital where my diagnosis was confirmed. My scans showed Sacroiliitis, which is often an early symptom of ankylosing spondylitis.

Thus, my journey began in 2009 with the hunt for a medication to slow down inflammation in my body. My rheumies have monitored my disease and worked to find tolerable treatments ever since.

Questions For Your First Rheumatology Appointment

Patients often seek out a rheumatologist when they are experiencing symptoms which might include joint pain, joint swelling, extreme fatigue, disrupted sleep, and malaise that can’t be explained by a primary care doctor.

We go to a rheumatologist when we realize something isn’t right. Ideally, we learn if we can put a name to the symptoms we’re experiencing. The question we hope will be answered is, “Do I have an autoimmune disease?”

The road from symptoms to diagnosis can take a long time. In fact, for people like me who suffer from Spondyloarthritis, the average delay to diagnosis is still between 7 and 10 years. Thus it’s of the utmost importance that you have pertinent questions for your first rheumatology appointment. The relationship between you and your rheumatologist will be one of the most important relationships of your life. It’s best to be as prepared as you can be for your first appointment.

Let’s get started with your first appointment. Here are some important question suggestions that you may find helpful.

How Do I Describe Chronic Pain To My Doctor? — *How do I describe my chronic pain to my doctor in easy to understand terms that they can understand?*

What should I focus on during my first rheumatology appointment?

For your first appointment with a rheumatologist in a hospital’s Internal Medicine Department in Taiwan, you’ll want to focus on the following:

Your new rheumy will begin by asking about your symptoms. Be as specific as possible.

I’ve been in pain for __.
My pain frequency is: (constant) (intermittent)
My pain lasts for __ before it subsides.
My pain occurs when I am doing __.
What makes your pain worse?
What helps to lessen your pain once it has started? (List medications, coping techniques, and anything else that you’ve noticed takes an edge off your pain.)
Include treatments and actions that increase your levels of pain.

Was the pain happening at rest or during activity? Start documenting now so you have solid info if it persists and lasts longer than three months.

Describe your pain in detail! I wrote this for patients here after an RA patient said she didn’t know how to explain different types of pain to her doc.

Visit my Ko-Fi Shop for a FREE monthly pain and mood tracker. You can choose the free version or buy me a Ko-Fi for $1.50 to get the fancy version AND the free version. Get yours here:

MAKE SURE YOU TAKE PHOTOS

If you’re not in the habit of taking photos, MAKE SURE YOU TAKE PHOTOS.

Do you see any swelling on your joints?
What kind of mobility differences are you noticing with the swelling?
Does movement help or make it worse?

Provide something next to the joint that provides context to the amount of swelling. I’ve used rulers and measuring tapes, but in a quick pinch, chapstick also works well.

Keep it well documented as Taiwan NIH relies heavily on photographic evidence.

Include: Dates, times, types of pain, where the pain is located (localized or widespread), etc.

A list of autoimmune diseases on a purple background with a light purple table and a massive list of diseases.

My autoimmune disease list is extensive. I added my diagnoses in bold. Click on the image and it will take you to a larger image.

Here’s a short guide to autoimmune disease for more info

It’s the extra info you give them, INCLUDING FAMILY HISTORY, that will help them track down a diagnosis for you.

Any of those diagnoses in your history? If yes, then they’re linked and you need to point that out. Your family history is important. If your great grandmother or aunts suffered from autoimmune disease, or someone in your family has autoimmune disease, be sure to tell your doctor.

Autoimmune disease is highly hereditary. It runs in families!

What should I know about my disease or symptoms right now?
What is a flare? What should I do when my symptoms get worse?
How common is my disease?
What is a reasonable long-term prognosis?
Will I get better? Is remission possible?
What are some common misconceptions I should know about?

Learn a little about lab work and blood work

What should I consider with blood tests and reading my own results?

Why are you ordering blood tests for me?

Blood alone does not make a diagnosis. However, rheumatologists order blood tests to check your ESP and CRP levels. These labs measure blood inflammation which tells doctors if you have active inflammation in your body.

They’ll likely do a standard RF blood test which helps to diagnose rheumatoid arthritis. They’ll also run an ANA test. An Antinuclear Antibody test is a blood test that looks for antinuclear antibodies in your blood. Antibodies are proteins that your immune system makes to fight foreign substances, such as viruses and bacteria.

You may be asked to undergo further lab work or imaging studies. This could be because your rheumatologist has a certain autoimmune condition in mind. They’ll also use this information to rule out conditions that can be mimickers and to hone in on a diagnosis.

Additionally, blood tests can ensure you are ready to start medication. While you’re at it, maybe you want to have them run a vitamin panel and check your iron. These tests usually cost extra, but it’s a good decision to check them.

It’s important to understand why these tests are being ordered. Don’t be afraid to ask!

Finally, it’s also possible to be seronegative which means it doesn’t show in the blood. Learn more about seronegative autoimmune diseases here.

If you’re seronegative, like I am, then your rheumy will have to rely on diagnostic criteria, so again, that’s why it’s important to document everything.

With blood tests in Asia, it’s common for doctors to use ‘general ranges’ for men and women. However, they rely on Asian ranges and they don’t often consider ‘foreign’ ranges. I’ve run into this problem many times with countless doctors in Taiwan. To give you an example, this study concluded that “Black men have lower average haemoglobin than Asian men, whereas Asian women have lower average CRP values when compared with White women.“

Doctors in Taiwan usually see Asian patients.

Be sure to advocate for yourself and provide a gentle reminder that your blood tests might not look the same as other patients in Taiwan because of your ethnicity.

When doctors get blood results back, they pull it up on their computer screen. I strongly recommend scooting your chair up to their screen. Your results, hopefully, are lined up in black.

But if your results are high, they’ll be in red on the screen.

Jot those results down and track them. (I track everything on my Google calendar because that’s easiest for me.)

Other things to consider about your symptoms in Taiwan…

What’s the weather and air like?

Taiwan experiences bouts of really bad air quality. When the air quality index get bad, it’s common for autoimmune symptoms to ramp up. There are many studies that prove that bad air quality causes more pain and fatigue. My allergies have been nuts and with the barometric pressure changes, I get non stop migraine. Swollen lymph nodes can occur with bad air quality. Autoimmune patients are highly prone to having flare ups with bad air! Track it on your calendar and see if your symptoms match up.

The heat and humidity that has been constant WILL and does cause weird symptoms.

Look at the weather on days you feel cruddy. Was it hotter than normal? Do you tend to get worse with heat? Do migraines and headaches get worse with heat and humidity?

Important Questions to Ask Your Rheumatologist

Ask directly: Does this sound like an autoimmune condition?

After you’ve discussed your symptoms at your first visit, your rheumy will likely have a good idea in regards to whether or not you’ve described an autoimmune condition. Sometimes it can be quite clear and other times it is not.

Ask your doctor what they are thinking towards the end of your appointment. Are there any steps you can take after you leave your appointment? Are there further things to look out for?

What is my diagnosis?

It’s easy to get lost and confused in appointments. When you are sick and in pain, appointments can be a blur. Ask your rheumatologist to clarify your diagnosis if you feel confused. It’s also okay to take notes to help remember your visit and discussion.

What should I know about my diagnosis?

It’s ok to ask about your disease. When you get a new diagnosis, ask as many questions as you want! Be sure to ask about what will happen with follow-up visits and check to see if you should be watching for other kinds of symptoms.

What should I expect with treatments?

A new diagnosis likely means starting a new treatment to control your disease. Ask about your treatment options. Be sure to raise questions about medication side effects. Don’t let a doctor get away with not telling you about med side effects. Pharmacies in Taiwan do not disclose this information. Make sure you get it from your doctor and check your med side effects online.

What medications do you recommend for me and why?
What are the risks with the medications you’ve recommended for me?
Should I prepare for med side effects?
How quickly will the medications start working?
Do I have to take these meds for the rest of my life?
Is there anything I should avoid with these meds?
How do I know if the meds aren’t working?
What happens if I get an infection? Should I stop my medications?
Do I need to be wary about being in the sun?
Is weight gain, weight loss, or hair loss common with this medication?
Do I need to think about taking supplements or avoiding supplements with this medication?

Are there treatments other than medications that can help me feel better?

My personal experience in Taiwan is that rheumatologists have never suggested lifestyle and dietary changes to help me feel better. However, rheumatologists in other parts of the world highlight these very important changes that all patients MUST make if they want to feel better.

It is crucial that you get proper sleep, eat a balanced diet and understand the effects that diet can have in driving inflammation. It’s also important that you learn how to pace and determine which activities in your life make your disease worse. You must learn your triggers and recognize how stress can make illness worse.

For future appointments, don’t assume that your doctor knows or remembers how long you’ve been in pain. If you’ve been experiencing pain for a year, a month, or a decade, your doctor needs to be reminded and remind them regularly.

It is my hope that rheumatologists in Taiwan get better at offering lifestyle advice. Here are some other questions to think about:

Does my condition or disease cause fatigue? How do I deal with that?
How will it affect my mental health? What can I do about it?
How can I keep myself safe when I’m immunocompromised?
How do I know when I should go to ER?
What kind of activity can I do that will be good for my joints without causing stress?
Are there any aids that I can use that will help me live a better life?
What kind of adaptations should I make to make my quality of life better?
Is physical activity good for me? What should I do to exercise safely?
Does exercise help or hinder my disease?
What should I eat and avoid eating?
Which foods make my condition worse?

Remember that the global patient network is huge. Patients learn, overwhelmingly, from other patients.

What kind of support groups can I access to connect with other patients with my disease?
Do you recommend following any websites to educate myself?
Where can I find the latest research on what’s happening to me?

This is at the heart and center of what I do here at My Several Worlds. At some point in my life, patients will be teaching their doctors and sharing their experience and knowledge in ways that doctors find helpful. It’s already happening in other parts of the world. Let’s hope it starts happening soon in Taiwan.

Remember that your story matters. Patients can be great teachers for their doctors as well! I hope you find a doctor that recognizes the importance of the doctor-patient relationship.

I hope my guide to Questions For Your First Rheumatology Appointment helps you help your doctor. You’re not alone!

Questions For Your First Rheumatology Appointment by Carrie Kellenberger