Meeting with my Rheumatologist

I think many of us worry about whining too much when we see the doctor. Sometimes I feel if a new treatment didn’t help, it is me who failed. And I hate sharing that fact. Realistically, our docs can’t help us if they don’t hear our whole story. So, in attempt to be honest but not “whine” I try to stick to factual wording of my symptoms, include any positive news and save more dramatic terms for when things are really crappy.

I had complained of hip pain (among many other joints) on every visit, but we hadn’t spoken specifically about it. Finally, I told my doctor – “I really need your help with my hips. They are what are having the worst effect on my daily life. They hold me back from enjoying activities” He asked me, “if we could improve them, would you feel your RA was under better control?” He ordered an US and found mild effusions in both hips. We put a PT and topical NSAID plan in place and it has made my daily life better. Didn’t cure all my hip pain or my RA, or help my other joints, but I am moving better. He understood my priority and helped improve my daily life.

I recently started asking him to tell me what he sees on the physical exam – they note a lot more than they tell us – and it’s been helpful for me to understand his treatment choices. I also am more able to look at my joint and see changes.

Remember, doctors may only answer the questions we ask. I find as I ask more questions based on my experience or info from quality sources, my doc stays with me longer and answers my questions more fully. He seems to enjoy being engaged on a higher level. I get a copy of his notes from every visit. I’ve learned a lot about my disease and his thought process by reading them.

And guess what? All that advice about taking in written notes of symptoms and questions is spot on! I am a pediatric nurse – rheumatology is not my field. I used to feel it made me seem less informed to show up with notes. My son is a physician and he says it is incredibly helpful to have patients that journal their treatments and symptoms. With brain fog a symptom, I finally started taking in notes with my symptoms and questions – and it’s made for a much better give and take at appointments. I use a note app in my phone between appointments so when I think of anything I enter it there. When it’s appointment time, I look it over and organize my thoughts.

Every time my dad goes to the doctor he says, “He didn’t do anything.” Dad doesn’t do a good job reporting his symptoms or concerns. He thinks if there is no procedure or new prescription, nothing’s been done. And if the advice is self care – forget about it! It’s the doc’s job to make him feel better ASAP! I’ve decided I’m not going to be my Dad…

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The RheumatoidArthritis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

View Comments (4)
  • LynnS
    7 months ago

    Thank you so much for this well-written perspective. I find myself worrying about wasting the time of my Rheumatologist, and therefore don’t say a whole lot that is helpful or informative during my appointments. In addition, I am so embarrassed by my brain fog and memory issues that I avoid discussing anything in detail. It’s time for me to take a more active role in my treatment and begin journaling my symptoms.

  • rockcandi
    8 months ago

    What a wonderful idea to get copies of your doctors notes! I recently found out I can access my docs notes on my “mychart” page, but had never thought of it before. It’s extremely helpful in understanding the doctor’s thought process in what’s going on with me daily and selecting treatment plans. It also lets me know if I’ve communicated correctly exactly what’s going on. I tend to focus on what’s going on the few days before and of the visit but that’s not always the biggest issue I’d been having between visits. So after seeing that and realizing that’s what I was doing by reading the doctor’s notes, I made adjustments and it’s made a huge difference. I’ve always taken notes and journaled so now I really look back at everything I’ve written between visits so I can pick out the true biggest issues instead of simply the most current.

  • Erin Rush moderator
    8 months ago

    Hi J0dspace! Thank you for sharing! You really emphasized the importance of taking notes and really sharing what’s going on with your physician. It’s the best way to get the most out of your precious appointment time!

    And, as someone in the medical profession, you can speak from experience (and the input of your son) about how helpful open and honest communication can be for both a doctor and his/her patient. The doctor/patient relationship is more of a partnership and it works at its best when both parties are doing what they can to communicate what is going on, what has worked, what hasn’t worked, and what should be tried in the future.

    I am so glad you shared your perspective on this very important topic. It’s a great reminder to work together with your physician to get the care a person needs and deserved.

    Also, I am glad your hips are doing better.

    Thanks again! Best, Erin, RheumatoidArthritis.net Team Member.

  • Richard Faust moderator
    8 months ago

    Great to see how you are taking charge of of your care and treatment J0dspace and thanks for sharing this information. It is also great to hear how engaged and open to your active participation your doctor is. My wife, Kelly Mack (a contributor here) has a great rheumatologist (not always the case). In this article she describes how he goes beyond the numbers to assess overall wellness: https://rheumatoidarthritis.net/living/assessing-wellness/. She notes: “My rheumatologist begins our visit with the same question every time: “Kelly, how are you?” He doesn’t look at bloodwork first or the computer screen. He looks into my eyes, examining my face. He is trying to assess how I am feeling.”

    In addition, thought you and others might appreciate this article she did on preparing for a rheumatology appointment: https://rheumatoidarthritis.net/living/preparing-for-a-rheumatology-appointment/. Best and thanks for being such a valuable member of the community. Richard (RheumatoidArthritis.net Team)

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