It’s that time of year again. The leaves are turning yellow and crisp, berries and greens taste better, and I have to reintroduce closed toe shoes into my life. I have only worn them once and I am reminded that we’re not friends, whatsoever.
But if you ask my rheumatologist my RA is under control and I’m doing well! I have no swelling and I am swell! It’s like a dream! It’s dreamlike all right, as in it’s not reality. I scheduled an appointment to see him to tell him the last couple months have been awful and I’m having more bad days than good. I was nervous about my appointment, as I often am, because I have no idea what will be next. Enbrel was a hunch but, there are other drugs too and ultimately it’s my insurance who calls the shots. I love puns. There was also a thought that he would want me to be on Humira a full year to see its full effects. Methotrexate would remain my companion, of course.
I had to have an earlier appointment than originally scheduled because doc had a meeting come up. My appointment moved from 10am to 7:45am. Yuck. To my surprise, when I arrived there were five other patients there already. I was looking forward to his office being completely empty. Silly me for thinking that was a possibility. Though the office was bustling, the appointment was quick and I think I was there for about 30 minutes… total! It has to be a world record. I should really contact Guinness.
One of the reasons I always thought doc was amazing is because he seemed to be able to feel swelling in my fingers that was not visible or physically detectable. Four pills of methotrexate- he still felt swelling. Six- the same. Eight- it improved. Add Humira- I’m doing fantastic! I am healed! The odd thing for me is I rarely have swelling and it’s hard for me to see and it’s my friggin’ body. Upon my severe onset, I had NO swelling (though my fingers locked up and were agonizing enough to not be able to wash/dress) and even my blood results only showed only a couple points over normal inflammation levels. He told me, back then, my nearly normal inflammation levels and nearly normal RA Factor could be an indication that I didn’t have RA. I have never been to an appointment with him when I detected any swelling but doc is the pro, right? A magic man.
He came in plopped down in front of his tablet asked me what was going on. I told him it didn’t seem the Humira was helping anymore. I didn’t feel it kick in or ware off. I had new symptoms, like ribcage pain and it made it difficult to wear a bra. “Only your ribcage hurts?” he asked. “No, all of my normal joints plus my ribs.” He didn’t say anything. He felt my hands, as he always does and said my hands felt great and that they medications were clearly doing their job. “But, I have never had swelling,” I whimpered. “It’s time to start thinking you could have something on top of RA,” he said while staring at his tablet with conviction and continued, “Ribcage pain is not typical for RA and could be pain related to something else. You don’t have any swelling which indicates your RA treatments are working. I’d like you to try a treatment for Fibromyalgia either Lyrica or Gabapentin. If it helps, then we know it’s Fibromyalgia and if not, we’ll have to keep investigating,” he said with ease and continued, “I’m going to send off a prescription for Gabapentin now and I want you to start taking it tonight.”
I saw him for less than 10 minutes, he didn’t gather much information (other than ribcage pain), and I was out the door to be a test dummy with a new medication. I was infuriated upon exiting and burst into tears. I’ve read about fibromyalgia and from what I have read diagnosis isn’t as simple as take this and if it helps you have it. What about tender points? What about talking to me to see what symptoms I have? How the hell does he actually know it’s not RA? And that the medications are working? Do my fingers have a way of communicating with doc that I cannot see/hear? I call bullshit. I’ve never had real swelling!!!!!
I am seeking a second opinion because after reading all morning, all night, and all morning again fibromyalgia seems to be over diagnosed. If I have it, fine. If not, I’m not interested in being over medicated to make docs job easier. I’m interested in having a doctor who listens and doesn’t gage my RA purely on swelling- all of a sudden (P.S. My hands were slightly swollen last night, of course). He used to ask me how I felt because that was the most important indicator. What happened to that?
Has anyone else experienced this? I’d love your input!
Now onto the hunt for another rheumatologist…