If you’re like most chronic illness folks, you’ve been waiting quite a while to get in to see a Rheumatologist for the first time. The shortage of Rheumatologists is palpable throughout the journey, and finding a good one is worth the wait. The wait is, however, quite difficult and feelings of overwhelm and being lost, scared and worried can rise up quickly. Concerns about new diagnoses, the unknown journey ahead, and guaranteed 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 wait anyway. So, the time isn’t all lost and the diversion is healthy.
Let’s dig in.
During the exam, the nurse will reconcile your medication list and type in the main reason for your visit. Be sure you know what medicines you take – prescribed and over-the-counter – and know why you scheduled your visit: To begin the journey of a possible autoimmune diagnosis for your chronic pain, fatigue and other symptoms.
The doctor will press and feel (palpate) each of the small joints on the hands and feet for presence of pain and tenderness. Other joints will likely be assessed such as 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 located 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 and followed.
Establishing an accurate baseline is extremely important. For this reason, it’s also important that you not hold back (nor exaggerate) how bad your pain is. Your thoughts about how much it hurts, how well (or not) it responds to things like heat, cold compresses or maybe Tylenol, will prove useful to the diagnostic process. Also discuss how the pain limits you each day. Often, the clinic will have a 1-10 pain scale graphic hanging in the room and you may find this useful. WebMD offers a great approach to reporting pain or other symptoms to your doctor – Do Ask, Do Tell. Your physician will guide you in how to determine whether a symptom is something to pay attention to, something non-related, or just a new finding of normal stuff. I promise, you will now be tuned in to everything that happens in your body. Even things that have been working as advertised for years will seem like some weird, brand new out-of-the-ordinary symptoms simply because you’re now dialed in to it so closely. It gets confusing. Your medical team will help sort it all out.
Keeping a symptoms log is very useful here. I teach about keeping a symptoms log in another blogpost and also on my Facebook page, so be sure to check that out here.
The visit will take a while. There may be a long wait before you’re called back to the exam room. An extra dose of patience will work wonders for the day, so before you even leave the house, gear up for this. Take a book. Take your phone. Take some cards you might need to write. Take your journal (I usually bring this).
Consider taking notes during the visit. Don’t let this interrupt the conversation time, but if you’re like me, sometimes you just need to write it down for clarity later. Depending on the MD’s personality and bedside manner, you might politely ask for permission to take notes. Most physicians are good with this and understand the brain fog of autoimmunes. Notes will help you remember details later, which helps when recalling the visit to a spouse, kids, employer, etc.
There may be bloodwork for this visit, so plan to wear some sleeveless or loose-sleeved clothing. Pump up on the water ahead of time, especially if you’re a hard stick. If possible, skip eating or drinking anything other than water, in case the labs are fasting bloodwork tests. Certainly calling ahead and asking about the need for labs to be fasting is a good idea, too.
These are some of the basics about your first visit. It’s unlikely to get all the answers in the very first visit, so allow the physician lots of room to find out exactly what’s going on. This will take a few visits and some time. Be thankful that you finally got the visit and are in the process of ironing things out. Set your mind on the long haul, this isn’t a sprint. Beautiful things can be learned on this journey. It takes time. Lots of time.
Wishing you much success on your first clinic visit!
Disclaimer: Information contained in this website is intended for educational purposes. It is not meant to replace your healthcare team nor as medical advice. Please contact your physician or medical professional before making any changes to your current care plan, diet, or exercise routine