The First Rheumatology Visit - What to Expect
If you’re like most RA and auto-immune patients, you’ve been waiting a while to get in to see a Rheumatologist for the first time. The shortage of Rheumatologists is palpable throughout the chronic journey, and finding a good rheumatologist is worth the wait. The wait is, however, quite difficult, and feelings of overwhelm and being lost or scared or worried can rise up quickly. Concerns about new diagnoses, an unknown journey ahead, and possible lifestyle changes are valid and understandable. Accurate expectations of what your first visit will be like will go a long way to settle this tension, and thankfully, there are some things we need to get done during the waiting period anyway, so the time isn’t all lost and the diversion is healthy.
Each Rheumatology initial visit is different and will depend upon your unique presentation. For sure, there will be an extensive history-gathering discussion. During this time, the Rheumatologist or nurse (or both) will take an extensive history regarding your specific symptoms over the last few months, as well as any family history of auto-immune or other inflammatory conditions. You will probably have filled out history information on several patient forms ahead of time. Besides the history, there will be a lengthy physical exam.
During the exam, the doctor will press and feel (palpate) each of the small joints on the hands and feet for presence of pain/tenderness. Other joint areas will be assessed, like knees, ankles, shoulders, and any other place you state there is pain, tenderness, redness, swelling, etc.
This part of the exam is really two-fold. First, it lets the doctor know where your symptoms are and how you describe pain severity in different areas on your body. Secondly, it serves as a baseline to which future visits will be compared as the course of your illness is watched and determined. The baseline is extremely important, and it’s also important that you not hold back (nor exaggerate) on how bad your pain is. Often, the clinic will have a 1-10 scale, or some other objective description for your pain. WebMD offers a great approach to reporting pain or other symptoms to your doctor – Do Ask, Do Tell. Your doctor will guide you in how to determine whether a symptom is something to pay attention to, or something non-related, or just a new finding of normal stuff. I promise, you will now be tuned in to everything that happens with your body, even stuff that’s been working as advertised for years will seem like some weird, brand new out-of-the-ordinary symptom simply because now you’re dialed in to it.
Other symptoms regarding fatigue, feelings of being tired, inability to finish the usual day's work or chores, fevers, and other general RA symptoms are important for the physician to know. During the weeks leading up to your appointment, keep a log of these symptoms. I keep a symptoms calendar, which is just a simple calendar I purchased and instead of writing down my to-do's, I just log my symptoms. There are also some smart phone apps for tracking symptoms. Your Rheumatologist will find tracking this very helpful.
Rheumatology Tests and X-Rays
Labs and x-rays or ultrasounds are almost always part of the initial exam. There isn’t just a single positive-negative diagnostic test for auto-immune and Rheumatoid, so your doctor will probably do many different diagnostic steps to discern the whole picture. Trust your doctor here. He will know what to look for and will depend on you for accurate information regarding your symptoms and what you're feeling. I find it best to give everything you can think of and let the doctor determine if it’s something that’s relevant or not. My rule of thumb is – I give the info and the doctor determines whether it’s relevant. Use some basic common sense here, though – your doctor probably doesn’t need to know if you ripped a toenail in the garden three years ago, nor that you broke your glasses and are having trouble seeing without them. And at the Rheumy visit probably isn’t the need to discuss hot flashes from early middle-aged issues. With a little stream-lining on your part, the doctor will guide you through the things she needs in your particular case.
Note: Be respectful of the doctor’s time. Just as you had to wait months to see a Rheumatologist, others are having to wait for these highly-skilled specialists, as well. Ask all your questions, make sure you have all the answers you need, and certainly establish a rapport with the provider, but consider saving endless small-talk for another time or for another person.
At the end of your visit, the Rheumatologist will recap everything and give you instructions on what to do next. Now’s the time to ask your questions regarding suspected diagnoses, next-step treatment plans, how/when you'll get test results, and other pertinent questions. I promise, your Rheumatologist wants to help you, and she will go to great lengths to make sure you are comfortable with the visit, the current progress of things, and what you can expect next. The nurses are also available and happy to help in any way they can, so feel free to ask them for assistance in understanding medications, side effects, scheduling next visits, etc. If they can’t answer your questions, they’ll get you to the right person.
Next-step Questions might include the following:
Medications – explanations and expectations for side effects, costs, etc.
When might I expect to feel some better?
What are usual long-term outcomes?
Can I exercise?
What can I do for better sleep? Better stress levels?
Is there a support group?
Can the social worker help me with insurance issues or covering treatment costs?
RA Tip: Initial Rheumatology visits can take hours, especially if there are labs, x-rays, and other diagnostic testing procedures. Don’t try to force this into an hour lunch break from work. Take a sick day. This visit is definitely important enough to burn a whole day. I found that the visit and testing itself took several hours, and then I needed an hour or two to process emotionally all the things I heard that first time. If at all possible, just take a day. It’s that important.
RA Tip: Having a list of meds you’re already taking is critical information for the physician. Drop your meds in a bag and take it with you. Or take a picture of each medication and keep it on your phone. Have a digital or written list the night before. Any of these will work. Be sure to include vitamins, over-the-counter meds like antacids, supplements, and anything else you ingest or inhale (asthma inhalers, diffusing essential oils, etc).
RA Tip: The paperwork to be filled out for this initial visit is e-NORRR-mous, oh my word. Filling out this many forms is hard on the hands and fingers. If you’re like me, typing is much less painful, and after about the first 2 forms of pen-writing, my fingers are almost done. Especially if I’ve had to hurry and couldn’t take a rest break. Call weeks ahead and ask the office to send you the forms. Or if close by, just go pick them up. Often they will mail them anyway. Fill out the forms a little at the time to minimize pain and swelling. If you can’t get the forms ahead of time, go early for your visit so you’re not rushed and can take breaks to stretch out or rest your fingers. Some AI (auto-immune) patients use an ergonomic pen and report that this helps.
RA Tip: If possible, consider not using optional pain relief meds like Tylenol, Advil, etc., for a couple of days before your visit. You want the doctor to see all of the pain and if it’s masked a bit with pain relief meds, the Rheumatologist may not get to see exactly how bad the symptoms are. Since this is your baseline visit, the real pain levels may be helpful diagnostically. Always ask a doctor, like your PCP, before making changes to your meds, but this may be something to consider diagnostically.
Here are some helpful articles from trusted sites on what to expect at your first Rheumatology visit.
Be ProActive regarding Stress
Stress levels can run very high in the waiting, so decide to be pro-active in this regard. Begin to accept a mindset of this being a journey. You won't have all the answers in a day. Not even a month or 3 months. It’s a long journey and some chapters will be better than others – at least, less bad than others. You’ll find your stride and in time, things will settle down a bit. It may take just a few weeks, for some it has taken years, and for most, there are good seasons and not-so-good seasons. It’s just how these illnesses work.
So, Sistah …. strap on your boots… grab your hat… pour some iced tea... and settle in for the ride.