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...
What strategy to fight fatigue is most effective for you?