It’s important to preface this: I have lived with these symptoms for several years, but because my health does not permit me to work, I have merely had to hope that a diagnosis would be forthcoming sometime in the future. But now that I’m reaching the end of my classes (which I take online), I risk being let loose from college without the ability to actually function in the world. First I want to attend classes on campus for a time because my hopeful profession is one that requires hands on interaction with other people. I tried attending campus once before, but those were some of my worst days in this withered state. The last thing I want to say is that I have had a few tests done: colonoscopy, blood work to test for Epstein Barr, etc. I don’t remember the full gamut because most of them were several years ago.
Some of the symptoms are as follows:
- Moderate fatigue, occasionally severe. It’s hard to predict. “Brain fog”; difficulty concentrating and remembering words and details, which makes conversation difficult. Moderate weakness. I joined cross country in high school, but now I can’t even run a mile. Straining myself tends to worsen it.
- Digestive problems; cramping, gas (the buildup of which over several hours can cause pain), bloating, mild nausea, indigestion proportionate to fatigue. Ravaging hunger pains when I go several hours without food (I don’t think that’s normal).
- Sleep problems; I sleep for an unrefreshing twelve hours a day (it’s all in one block…I don’t feel the need to fall asleep during the day). If I get less than eight or nine hours, then I’ll probably have severe fatigue throughout the day. In fact, waking up early is a horrible task. It’s like asking any healthy person to wake up from two hours of sleep day after day after day. It’s impossible for anybody to maintain on a continuous course. And yet I’m roused from sleep frequently to brief consciousness throughout the night because of any little sound; I usually fall back asleep quickly. I have occasional insomnia. In the past I have had such problems as hypnic jerks and sleep paralysis; those periods lasted for maybe weeks or months.
- Other symptoms: moderate sharp and random muscle pains everywhere, muscle tightness, occasional tingling, husky voice, strange, unappetizing tastes on my tongue. Maybe a few other things. It’s hard to keep track, hard to know what’s a symptom.
Most doctors I see characterize this as a digestive issue, including a fatigue specialist I went to a few years back (although one hospital I went to had me going on a spin cycle of specialists from one to the other). It seems to me that most of my symptoms stem from the fact that my body is broken down and weakened. I wouldn’t doubt that digestive problems are the genesis of that. I'm not sure where the bad nights of sleep germinate from.
There is one more thing that bears mentioning. I notice that a lot of people with similar symptoms tend to gain weight. I ate very badly for several years and rarely exercised because of my condition, although I only gained several unwanted pounds (I doubt I took in a huge surplus of calories, however). But since then I have found fat loss nearly impossible. I eat healthy, and I eat relatively few calories. I can only exercise so much, but I have been able to gain a moderate amount of muscle in the same time span. I’ve been trying to observe how each individual change or sensation within my body relates to my health, and I’m not entirely sure what all of that says.
One last thing: I’m in no condition to work. It’s impossible within any reasonable expectation for me to stick to a regular sleeping pattern, and I can’t predict when my fatigue will allow me to do certain things and perform common social tasks. If I don’t have a job, then I can’t afford tests and doctor visits. I don’t really understand the efficacy of this system. I need help more than most, but I don’t know how to get that help. This is a very blind question, but is there something I can do? General help would be nice, although I also wonder about any relief related to medical costs because I'm not aware of any that appeal to people who cannot work or who have not really worked in the past. I’d really like some expedience on attaching a name to these feelings and deficiencies so that I can seek a proper treatment. The workload from my classes has been very stressing on my health lately, and it reminds me that there is no way I will be able to cope once I’m smoked out from this distant existence I have erected for myself away from the daily expectations of a normal, healthy life. I’d like to absolve myself of this so that I can take my remaining classes on campus and get an actual job.
Sorry for delineating. If you could offer any help or advice, then it would be appreciated. Thanks in advance.
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