Last week was my appointment with my new rheumatologist. The reason I decided that I needed a new rheumy was because the previous one never heard a word that came of my mouth. When I expressed my concerns, she would either ignore them or change the subject. Moreover, another issue I had with rheumy was that she never encouraged me to find out all I could about rheumatoid arthritis and fibromyalgia. She never suggested alternative therapies nor did she seem knowledgeable about fibromyalgia. I have always felt that medications are not the only route for patients, but the previous rheumy did not seem to understand that. She had never read an RA or FMS blog nor did she have either condition so she didn’t possibly understand what it is like living RA and/or FMS and what a challenge life was for a sufferer.
Perhaps, I am mistaken but you would think that a rheumatologist would take the time to listen and to try to understand the sufferer’s perspective because I don’t believe that medical perspective is enough. A rheumatologist needs to be aware of the sufferer’s perspective to provide adequate patient support. The reason so many have suffered for years without diagnosis is because many doctors do not take the time to understand the frustration, the impatience and mistrust that sufferers go through when interacting with the medical community.
The first step to finding a rheumatologist you can work with is researching the person’s knowledge and expertise about your conditions. You can ask your primary care physician or you can do some online research on rheumatologists in your area. Your insurance company can even be a helpful resource. Also, ask others in your local area that you have connected with as a result of your condition, i.e. through a support group. You can also visit the American College of Rheumatology’s website for information on local rheumatologists and their specific specialties and concentration areas. Moreover, you can find out more information on a specific rheumatologist and their certifications by contacting the American Board of Internal Medicine.
Prior to picking this new rheumatologist, I did some research. Quite frankly, I did no research with my first rheumatologist as she was a referral from my primary care physician. With the search for a new rheumy, I wanted a female physician because I have always been more comfortable with female physicians. Second, because I needed someone who actually understood fibromyalgia, this was another area of research. I also asked others in my local area who were dealing with the same conditions what physicians they were seeing. I looked at the education, specialties, affiliations, and certifications of the rheumatologists that I came across in my research. I knew that I did not want to see two separate physicians for my conditions even through that was suggested to me as an alternative. I also wanted someone who was younger with newer and more modernized training and perspective within the field of rheumatology and my own conditions.
I eventually settled on a physician whose specialty was rheumatologic and immunologic disease. She specializes in both my conditions and her education and certifications were quite impressive. Her education and experience were more recent and she appeared to be between ages 35 and 45 so I picked her based on all these factors.
I also wanted an office where I would not be waiting forever to be seen. I was the first appointment and was called within a few minutes of arrival and finalization of my new patient paperwork. I also had my toddler with me because he was getting his cast off later in the day. I was impressed that everyone in the office was attentive to him and not distracted by his presence. I would not have had the same experience at my previous rheumy’s office.
When I was called in, the nurse took the usual vitals and went through questionnaire and history of my conditions. The nurse left and the doctor was in within a few minutes. The rheumy also questioned me about the history of my conditions, my medications and how I felt I was progressing. She changed my fibromyalgia medication as I told her I had not seen any change there, and she agreed with me about the Plaquenil and the issues that I was having with my eyes. She agreed that Plaquenil should be stopped but wanted to wait until my next visit because we were incorporating Lyrica for my fibromyalgia and stopping the Gabapentin (Neurontin). Therefore, she wanted to wait to stop the Plaquenil and start on Methotrexate. In the past, I had been hesitate about methotrexate but I am actually considering it at this point because all I want is to feel better and my husband and I have no plans to have any more children.
All in all, I was happy with my experience, and I appreciated the fact that my new rheumatologist took the time to listen and address my concerns. She also reminded me about the side effects of Methotrexate and told me to think about my options prior to my next appointment.
One of the most important lessons I learned from my treatment experience is that my doctors and I are a team and even though advocating for myself is important, it is equally as important to have the right people on my team. Finding the right combination of team players is how I can and need to advocate for myself. In hindsight, I did not feel like I did enough of that in the past, but experience always teach us if there is a better course. Furthermore, our goals change as do our conditions and we get better at regrouping when we realize it is time to change courses.