I am exhausted.
It's just past 8am and I've been awake two hours, have had several cups of coffee, watched the news on MSNBC. I allowed myself to hit the snooze button for half an hour, until six. And I'm supposed to be at work shortly. I can't imagine how I will get through the day when all I want to do is lie down.
Up until last summer, I was always a pretty energetic person. Years of waking at the ass-crack of dawn to go to work has trained me well---I don't normally sleep much past five or six in the morning, and naturally wake up at that time. After I had to quit my job last year, and began taking prednisone and mtx, all of that changed. Now I simply walk around all day in a perpetual haze, a weird half-life in ether.
Other things are happening that I find alarming regarding my drowsy existence. My memory, which had always been phenomenal, recently began to slip. Years of working in a bookstore (with no computerized database, I might add) combined with my botanical education had allowed me to recall all sorts of information with ease. Yesterday, I had to ask my coworker what day it was. When customers give me numerical data, I have to write it down immediately or face the embarrassment of having to ask them to repeat it. I can't recall which band sang a certain favorite eighties classic, what kind of cat food our guy prefers, or the common names of flowers I see at work every day. It's beyond frustrating. It makes me sad on a deep level. Not only has my body turned against me, but my brain, like Elvis, appears to have left the building. But it's not just me having difficulty stringing my thoughts together to form a sentence, forgetting what day it is, or losing the correct words for an object or person. This is a real thing that happens to people with autoimmune diseases for any number of reasons. I discovered this by googling "RA brain fog". Disco. I am not the only one struggling with this issue.
Any number of autoimmune and central nervous system diseases, as well as the medications used to treat them, may cause "cognitive dysfunction". Since many of these conditions show symptoms that may overlap with one another, uncovering the source of brain fog seems to require commitment on behalf of both patient and physician. It is altogether too easy to simply dismiss subtle changes in mood, thought, and behavior as part of the disease or medication-related when symptoms may indicate the presence of other conditions. Depression, fatigue, and inflammation can influence brain function. Blood vessels in the brain may be affected by vasculitis, an underlying thyroid condition may exist, or the patient may simply have a vitamin deficiency. A comprehensive physical exam, medication review, blood tests, and neurological work-up may help determine the source of the problem. I've found it helpful to keep a "health journal"---weekly observations on what's going on in my body, including notes on mood/thinking and any other changes I have noticed. New observations have included the following: extreme fatigue, shaking in left hand, pain and swelling in knees/shoulders/elbows, super-bad neck pain, dry eyes and blurred vision in left eye. General stupidity and inability to recall simple, familiar data.
Good stuff. What the f***?
My current Rheumatologist seems to take a "quick and dirty" treatment approach that I strongly dislike. I have seen her three times since December but she has yet to take my vitals and did not attempt to discuss the results of my Sed rate, CBC, or CRP tests. At our last appointment, I mentioned that I have been experiencing widespread muscle pain and weakness and her immediate response was "Fibromyalgia...but we won't worry about treating that right now...". She seems to have to reacquaint herself with my history every time, but can write a prescription at warp speed. I'm in and out of the office within ten minutes. I have come to every appointment armed with several pages of notes and questions, but my brain fog makes it hard for me to advocate on my own behalf. My thinking is simply too disorganized to keep track of everything that takes place in that short time and write anything down. Do I need to take someone with me to help me?
I do have the names of three other Rheumatologists. I have them written down in the little notebook I carry in my purse. I think I need to make some phone calls. Note to self: find another doctor. Write this down before I forget.