1. Be unprepared.
2. Be opaque. Who needs transparency?
3. Leave dissatisfied.
Is it proper to say doctor’s appointment or doctor appointment? In my case, this one was the doctor’s appointment for sure. For months I was looking forward to my first appointment with a pain specialist in my area. After all, this appointment was scheduled for my birthday, and what a magnificent gift it is to get help with minimizing pain from chronic illnesses. Sometimes I get an adrenaline rush when my appointments approach simply because I might get some more help in feeling better, and sometimes that works against me. I was so ready for this appointment that I wasn’t ready at all. I wanted the new doctor to be able to assess my actual pain so I took no pain medication prior to the appointment. I thought I’d get a better appointment that way, but it backfired. I was in too much pain to concentrate.
I was unprepared for my appointment.
Usually, I make a list of questions and I bring my planner which shows which days I had certain symptoms, but I forgot to grab my planner as I headed out the door. Since this appointment was with a new specialist and I really didn’t know what to expect, I should have been extra prepared but for some reason, I let the appointment remain in control of the doctor. As soon as I met Dr. X I could see he was attempting to give me control of the appointment through his questions:
What brings you here today? Where is your pain? When do you feel this pain? What time of the day does this particular pain feel worse? What have you tried to make it less painful? So you’re in great pain but didn’t take any pain medication today?????
He needed information from me to guide him in discussing a treatment plan with me.
Where is my pain??? It’s complicated. I have Rheumatoid Arthritis, Fibromyalgia, and some Osteoarthritis, and each causes different, but also often similar, types of pain and sometimes it’s hard for me to distinguish between what is causing the pain. My daily all-over pain feels like a mild case of the flu. The pain I have in my feet, hands, and knees is worse in the morning when my joints are very stiff and painful to move. Ironically, movement helps, so they begin to feel less painful within an hour or so on most days. The pain never goes away at any point in the day, but it has different levels of intensity throughout the day and depends on what I’m doing. When I move more, I usually hurt less. Intense pain in my spine, however, especially in my neck and in my lower back, makes sitting or standing for long periods of time impossible.
When I last saw my rheumatologist about 2 months prior to this appointment, I complained of chronic pain in the base of my thumb, which was very swollen. The rheumatologist did an ultrasound of my hand and gave me a corticosteroid shot in my carpometacarpal (CMC) joint where there were multiple bone spurs indicative of Osteoarthritis (OA). He also gave me hand exercises to do which I do regularly to keep the CMC joint pain at bay. I shared that I had chronic pelvic pain for months and was seeing a gynecologist for that. A month later I saw the gynecologist who determined my pain was joint or soft tissue-related and could be from fibro or RA.
So, now you may see why it’s hard to answer the question: Where is your pain? It’s complicated, yes, but it helps the doctor when we patients can break it down to explain our pain. Tell the doctor what hurts, when it hurts most, and what triggers it if you know. When the doctor asked me to describe my pain and how I’m managing it, I just unloaded a mangled mess of words that I believe made him think I don’t know where I hurt. It’s challenging to describe pain when it’s popping up all over the place and is sometimes very predictable but other times not at all. (See “The Princess Bride” Fire Swamp scene for a great visual).
Be transparent. Filtering symptoms does not help in making a treatment plan. My rheumatologist referred me to the pain specialist for ongoing chronic pain that could be from a combination of RA, Fibro, and OA. The pain specialist wanted to target my pain and treat it. He kept asking what hurts most right at that moment, and I decided to focus on the one area I thought maybe he could help me with so I suggested my neck was the most painful spot at the moment. My neck does hurt intensely but I wish I could target more of my daily, all-day, everyday pain that wakes me up at night and keeps me from thinking clearly some days. I was instantly disheartened that we weren’t going to make any great strides in conquering my “all-over chronic pain”, but in time my neck might feel better. I guess it’s something. Next thing I knew the entire game plan centered on my neck. He expressed how his goal is to help me to get back to doing what I used to do without such pain. So he’s getting me back to 2010 or even earlier? I mean, that’s when I was able to do the things I used to do without such chronic pain! The doctor seemed fairly satisfied we had found some course of action to help in my treatment plan.
I left dissatisfied, but my dissatisfaction was more with myself, not the doctor. He tried with me; he really did. I just made a confusing hot mess out of it. We ended up deciding to do physical therapy and to get X-rays of my neck and lower spine. The PT can only target one area (because of insurance) so we will start with my neck. We also made a follow-up appointment for 5 weeks later.
My lack of focus was because of my lack of preparedness. I should have had my list of questions and my planner which I used to track symptoms, and even that was not detailed enough to be helpful. Instead of leaving unhappy with the plan, I should have asked what advice he had for how to manage my pain better until physical therapy starts. I had planned to ask about alternative ways to manage pain. Did he recommend acupuncture? Is aqua therapy an option somewhere where I live? I left without those answers because I didn’t ask.
Fast forward to a week later…The X-ray results show I have disc space narrowing at C5-C6 and mild reversal of cervical lordosis, meaning my neck is curving in the opposite direction of a natural arc. The natural arc of the neck helps support the weight of the head, enables the neck to move flexibly, absorbs shock, and aligns the neck above the pelvis. This could explain some of the pain I have from compressed nerves and the light-headedness I’ve been having. The second x-ray of my lower spine shows anterior spurring in the upper and mid lumbar spine. The x-ray also shows no spondylolisthesis and that the sacroiliac joints appear normal. I read about arthritis in the back, the neck, and also about back pain in Rheumatoid Arthritis. Since my pain is degenerative in nature and seems more mechanical rather than inflammatory, I think the changes in my spine are from osteoarthritis, but an MRI might be in my future to determine more about changes in my spine. (Pauses typing to jot another question for the doctor for the next appointment)
NEXT STEPS
My next steps are to start physical therapy in two weeks (that was their first available appointment), track my pain and habits that might be leading to more pain, make a list of questions for the pain specialist and for the rheumatologist, and to see that pain specialist again in a month. I get a do-over appointment!! Well, I can be more specific at this one anyway because I’ll be ready with my data. Do yourself a favor and don’t fight yourself at your appointments. We’ve got enough chronic pain as it is, so let’s not add to it. I think I’ll start calling my appointments “my appointment with the ___ doctor” instead of doctor’s appointment. 😉