Edited April 2014 from letter dated April 2010
Good Afternoon Doctor. I wanted to take a quick moment to update you on my current health situation. It’s been well over a year since I saw you last and I thought it would be helpful to provide you with some recent news on my situation.
On our last visit I had just been diagnosed with Pulmonary Sarcoidosis. I was put on a couple inhalers by the respirologist and did that for over a year. My most recent follow up and lung function testing in late January 2010 showed that the Sarcoidosis indicators in my lungs are gone from x-ray. My lung function test suggests that I continue to have a minor decrease in function but my lung capacity is apparently abnormally large to begin with, so this wasn’t considered a continuing problem. As a result, the respirologist has let me wean off the inhalers and I will only return to see him if things get worse again. I do feel better than when the Sarcoidosis flare-up hit in the summer of 2008. The difficulty in breathing etc. seems to have gone. On that front, I’m quite happy and will do what I can to prevent any future relapses.
That being said, I still feel far from “normal”. I am still overly tired. You had hypothesized that the multi-year battle with fatigue was the result of the Sarcoidosis and that I’d had that in some form since this all started in 2002 (and that it’s not CFS as my doctor had suggested). Now with the big flare-up in remission, it is discouraging to have the fatigue symptoms still lingering. Is this going to be a reality for me for the rest of my life regardless of whether the more severe symptoms are present? I keep thinking there is something else happening to me and hoping there is a fix for it, though that seems to be a fantasy.
One similarity between the initial onset of my fatigue symptoms and the more recent Sarcoidosis flare-up in my lungs is that both were preceded by an attempt to get healthy. Both times, I had embarked on a focused exercise regimen intended to get myself into better condition (lose some weight, build some muscle, improve aerobics, etc). Both times the exercise program triggered symptoms approximately 1.5 months into the routine. This can’t be coincidence in my mind. It seems obvious to me that I Sarcoidosis or a combination of ailments prior to starting my initial exercise program in January 2002. Or maybe I contracted them during that first program. Either way, I have no doubt that if I were to start increasing my physical activity significantly, I would trigger yet a third flare-up of the symptoms. This produces quite a conundrum when trying to be healthy seems to trigger illness for me. Perhaps it’s something in my muscles?
Another issue we discussed somewhat was the pain in my upper right back. An MRI had shown some DDD and you thought that might be causing the pain. I have since had a follow-up MRI and again, disc deterioration is showing. I have seen several different physiotherapists who’ve employed various techniques to help provide relief. I continue to try new ones when I get over the disappointment of nothing helping. This ailment is particularly frustrating since in impinges on my ability to function in daily life. It hurts most when I’m sitting upright, so driving or computer work or even dinner with friends can be quite difficult.
Similarly, the eye sensitivity remains. It seems to be a light sensitivity problem but eye specialists can’t find anything wrong with my eyes. I can accommodate this problem reasonably well, but again it is frustrating. Here’s a somewhat odd question. Should shaking one’s head somewhat vigourously up and down (like nodding yes) cause one’s ‘brain’ to hurt? Doing so for me causes discomfort in the front and top of my head. I have no idea if that is normal or another symptom, but I don’t remember it being uncomfortable like this prior to getting sick.
I feel as though I’ve gone through a battle with Sarcoidosis and yet all the underlying problems I had prior to the big flare-up in my lungs remain. Does this still suggest to you that the Sarcoidosis is ever present, bubbling along relatively mildly, and then flaring up when I over-exert myself (and by over-exert myself I basically mean behaving like most 38 year olds do)? Or is it possible that something else has infected me as well? Be it muscles or brain, something just isn’t right with me. The fatigue, aches, pains, it all tells me I’m not healthy, regardless what the x-rays and lung function tests say with respect to Sarcoidosis.