This week was full of surprises, but not all of them were the fun kind. I started the week by waking up in a flare on Monday, but I ended the week with an appointment with a rheumatologist (finally!). As I am typing this, I am feeling pretty overwhelmed.
I had thought that the flares wouldn’t be so bad since I moved to the new meds that seemed to make the pain almost non-existent. Turns out, even if the pain isn’t what it used to be, there are other symptoms that I should care about.
Past flares
In the past, a flare meant that I would wake up in intense pain, have a hard time moving my arms and legs, and I would be in a pretty low mood. I don’t know why they always start in the morning, but I have never had one suddenly start during the day. Once a flare starts, it will last between 1 and 6 days. They also disappear as suddenly as they show up. I can usually tell one is going away in the late afternoon, and then a good night’s rest resets me back to normal.
The motor control issues can get pretty extreme, and on top of everything, the sudden change can always cause me to have a panic attack. Waking up in tons of pain, still only half awake, and then going straight into a panic attack is a pretty horrible experience. One was so severe that we thought I was having a stroke.
This weeks flare
Back to what happened this week. I woke up and didn’t have the standard flare pain. Instead, in the normal painful locations, I could feel a very strong buzzing sensation. It basically covers my arms, legs, shoulders, and parts of my face. When I tried to stand up, I had to put a ton of effort into getting my body to move, and even talking could be pretty difficult. When I had gone to sleep the night before, I was pretty cheerful, and we had spent the day just relaxing and playing video games, so I was in a good mood. Upon waking, I found myself in a deep depression. I had thought that the pain before made me sad because I was upset about what was happening to me, but now that the pain was missing, the sadness felt really strange. It was like I had heavy weights holding me down, and the world was filled with grey.
I quickly let my support team know, and I decided I would try to push through it and do my normal work schedule. Not everyone was thrilled about that, but I just figured sitting around being sad wasn’t going to help. It was a very rough couple of days, though. It feels so strange to have a blanket of thoughts that seem to modify everything I am thinking. It’s like I can only look at the negatives while it is happening, so I spent most of the time at work with my webcam off and not engaging much in chat. Even with those changes, I was still finding myself just slumping over in the chair, feeling like everything was crashing down around me.
The sun rises on a new day
Then Wednesday came, and my flare and all the depression were just gone again. I was laughing and cheerful again. The buzzing feeling almost died away, and I felt like I could move around alright again. After talking with one of my doctors, they are having me track my mood and pain levels to see if they always match up like that or if there are times when they don’t. From my point of view (which could be clouded), it feels like they happen at the same time. I just have no idea if one causes the other or how exactly they are related.
I tried searching online, but when I don’t know what is happening to me, it just leads me down too many rabbit holes. I decided that I need to spend more of my effort focused on taking care of myself instead of trying to research what might be going on because I just don’t have enough information right now.
New hope
Now for the good news! After calling multiple practices over the last few months, my wife and I finally got an appointment with a rheumatologist! Up until now, all they would do is put us on a cancellation list because they have been so overbooked. We were shocked when we called one and they said they did have one doctor in the office with some spots left for new patients. We are scheduled to see them in the middle of July, and I am thrilled that we finally might get some answers.
To prepare for the appointment, I’m taking daily notes and recording any relevant information. I’m expecting to receive new patient paperwork soon, which should help me identify what to track in the meantime. It’s a relief to finally have an appointment with a specialist who can address my specific concerns. My current doctors are great, but they’ve all recommended that I see a specialist, acknowledging that my case is complex and requires expert attention. The overlapping symptoms will likely be a challenge, but having this appointment has given me new hope.