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Hi everyone, I am posting in hopes you can answer two questions (see below), but first some background on my situation: I've struggled with varying levels of fatigue since having mono 6 years ago. The fatigue got considerably worse last autumn. I keep a relatively regular sleep schedule (7-9 hrs per night), but there still isn’t a single day that I feel truly awake or alert. Some weekends, I can crash and sleep almost 48 hours straight, and that doesn’t help either.
Day-to-day, my only consistent symptoms are the extreme fatigue, poor focus, and fuzzy thoughts when trying to reason through things at work. One to three times a week, I’ll also get stiffness or weird aches (almost like growing pains) in my arms and legs that tend to be worse in the evening/bedtime. I’ll occasionally get dizzy spells, almost like I have low blood sugar, but they don’t happen every day. I did have really bad stomach problems (cramping, urgency, loose stools) for about 6 months, but they seem to have resolved on their own without any major changes on my part.
I've been to countless doctors trying to figure out what's wrong, and I am worried that I am heading towards a CFS diagnosis as more and more gets ruled out. So far I've had pretty comprehensive blood work checking my vitamin levels, hormone levels, and blood chemistry. Everything basically always seems to be in order--Vitamin D is sometimes borderline low, and WBC is often at the high end of normal or just barely over, but nothing major to remark on. Testosterone was low at one point and FSH / LH were extremely elevated; now testosterone is normal and FSH / LH are still quite elevated, but they’ve come down considerably. The endocrinologists say that there is no reason that this would cause my fatigue. I've even had a sleep study, which didn't really reveal anything either: sleep apnea index was just barely within normal range, but still normal. I’ve also been to the cardiologist and had my heart checked out; everything looked great.
So, I reach out to you with two questions--
1) At this point, what else should I have the doctors investigate? I don't want to leave any avenues unexplored. This is no way to go through life, especially when you’re only just shy of 30 years old...
2) Can someone with CFS handle regular physical activity? I thought a defining characteristic of the disorder was that physical activity worsens the fatigue. For me, physical activity neither helps nor hurts. Even on pretty bad days, I can still push myself through the fatigue and remain relatively active--for most of this year, I managed to run 3-4 times a week and even competed in several long distance events. I'm not saying that this sort of exercise is easy for me; it's often a major struggle, just like everything else I do. But I can still do it, and it doesn't seem to make things worse. Wouldn't this be pretty atypical for CFS, or am I mistaken?
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