My non-traditional adventures with non-traditional medicine

I think I'll start writing in this blog to share some of my experience. CFS has been somewhat crippling, though for many years I refused to call it that (CFS). That's mainly because I couldn't get an accurate diagnosis, I had read that CFS was considered a psychological problem, and I knew that it was not "all in my head." So I just struggled to deal with it without outside help, as best as I could.

I have slogged through much of this time using sudafed as a pick up, either gently employed or not at all employed or working at night and sleeping all day long. In my 20's I worked as a full-time musician (sleeping all day and rallying for a few hours each night to perform), then gently employed, then not employed at all for a time.

At the moment, I have a very good job, but it is full-time, and sometimes it is an extreme challenge to make it all work out. I do have generous sick leave available, and I find myself taking an average of one sick day per month, which is not great, but I struggle through most of the bad days as best as I can, and I celebrate the good ones.

I gave up many years ago on finding answers from the medical community. The few times I sought help for this I would be tested for the same group of suspected diseases: hypothyroid, diabetes, and one doctor wanted me to do some sleep studies, but I knew that sleep was not my problem. I don't sleep well, but that is a symptom of my problem, it is not the problem itself.

So I have struggled along the best I can. I was basically unemployed for seven years-- semi-retired, I liked to say-- working essentially for room and board at a family owned business where I could set my own hours, or not working at all. The times I did not have to work were the easiest times for me, because I could function at my own pace, which kept me relatively happy. But those days would not last forever, and I found myself in a position in which I had to earn my keep again, and that is where I am today.

I had found, by accident, many years ago, that Sudafed (pseudoephedrine) helped my fatigue enormously, and I used this drug for many years to combat the fatigue. I always figured it was the stimulant properties of the drug that helped, and because of that property, I could never use it past a certain point in the day. It was not a perfect solution, but it helped and kept me semi functional. But I have worried about long term use of it, and decided to try not taking it for a while. I started taking some supplements that seemed like they may be useful for energy (coQ10 and ALA) and stopped the Sudafed.

Recently (possibly as a result of feeling like crap again without being hopped up on Sudafed all the time) I decided to visit my doctor, just to see if he might have some ideas. It had been a long while since I'd tried getting help from the medical community. Maybe there was something new available to me.

My current doctor is trained in both western and eastern medicine, and he prescribed a traditional chinese formula which has, so far, been pretty useful. I theorize a lot, and one of the things I've been theorizing goes along well with recent thinking that CFS might be autoimmune in nature-- the formula that my doctor prescribed does contain several ingredients that are purportedly natural immunosuppressants. Additionally, my initial trial of this formula resulted in a flare-up of my eczema and catching a cold, which would seem to indicate that my immune system was indeed suppressed, perhaps a little too far.

So I've attenuated the dosage back to something that seems to be borderline helpful, and have added fish oil daily to my regimen in order to dial back the eczema outbreaks. This seems to be working, marginally. I'm currently at half the recommended dosage (my doctor recommended dosage, that is. The instructions call for twice what he suggested).

Yesterday I forgot a dose, and today I had a very bad day. Not as horrible as some days I've had, but not as good as recent days. So I made sure to take my full dose, and a little extra, tonight. We'll see where this takes me. I am very tired right now, so going to close.


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