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Chronic Fatigue Message Board
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Old 09-16-2012, 02:30 PM   #1
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Not typical symptoms but could this possibly be CFS?

Well, here goes... I'm a 21-year-old female battling a mystery illness for over five months now, and even before that I was feeling a little off. Around the end of March I was having a lot of days where I didn't feel too great... I would get plenty of sleep, but then I'd be driving home from class and feel so tired I felt like I could faint! I remember one specific day, I had just eaten dinner and I was sitting on the couch watching TV and I just could not shake the feeling of being spaced out and tired. I thought it would help me to take a walk and get out of the house but as I was driving to the park I felt horribly dizzy, and I struggled to walk about a half of a mile. Most days I didn't feel like that, but I did sometimes. Then I started having occasional digestive problems but nothing major. None of the things I was experiencing were anything worth seeing a doctor about.
Then at the end of April I got what seemed like a virus. Before it started I would get these spells of feeling tired, flushed, dizzy, and a little nauseous. Then I stayed sick for a week, with a low fever, body aches (mostly soreness in my ribs and back), and nausea that went on for a week. I got over that, and then in the middle of May I started feeling those weird tired/dizzy spells again, and next thing I knew I got what seemed like the stomach flu. It was really bad for about 2 weeks and ever since then the symptoms have came and gone.
For a while I would wake up every morning with terrible nausea until I'd vomit and feel better. I stayed dizzy and lightheaded and would get dizzy after eating, but also if I hadn't eaten for a while. By the end of June and beginning of July I felt a lot better and thought it was behind me but then in the middle of July I started getting sick again. Since then, the symptoms have been off and on... I don't wake up nauseous as much as I used to but I do have some bowel issues, like shortly after I wake up I will get an urgent need to use the bathroom. I almost never have diarrhea, though. I have maybe three or four times during this whole thing and once it was because of antibiotics. I have terrible gas and bloating; sometimes I belch until I gag and even vomit.
Some other symptoms I have are hair loss and thinning skin. The hair loss isn't too dramatic but it's definitely more hair than I was losing before; I think it's slowed down a bit. With my skin, I can't tell if it's thinner or my veins are larger/darker but there is definitely a big difference in the visibility of my veins. I have some tiny red dots on my skin that look like I got stuck with a needle. I also get spells where I feel like I can't breathe, spells where I feel like I'm going to faint, and spells that just feel like my brain is about to shut down. Those don't happen terribly often but more often than I'd like them to! On the days I don't feel well, I don't like driving very far because I'm afraid I'll pass out (even though I never actually have).

I used to think chronic fatigue syndrome was all about being tired so I never seriously considered it, but the more I read up on it the more I realize how much symptoms can vary. I'm not exactly tired in a sleepy sort of way but I feel weak, dizzy, and lightheaded a lot of the time. I also feel like I need to eat more (even though I have no appetite some days) and if I go more than a few hours without food I start to feel like I could pass out. My blood sugar has been checked and is always in the normal range.

Some things I've been tested for are lyme disease, autoimmune disease, thyroid problems, anemia, and more. My vitamin levels are all perfect, I'm not anemic, my white blood cell count is not high, my blood pressure stays perfect, and I appear perfectly healthy. But I still feel terrible aside from some good days. Even on my good days I'm never back to where I was before all of this started. It's keeping me from working and going to school, which I really need to get back to doing because I'm 21 and am about to enter the "real world." If this is something that's going to continue for much longer I don't know what I'm going to do because I won't be able to finish school or start a career! I sometimes worry I won't be able to have a family or do anything with my life other than sit around and wait to feel better.

I thought for a while that I could have been exposed to mold... there's a wall air conditioner in the bedroom of the apartment I'd been staying at that's covered in mold on the inside, and I slept right under it. When I got that virus (or whatever it was) I spent pretty much all of my time in there so I would've gotten a huge dose of moldy air. But I moved back to my dad's about a month and a half ago and the problems aren't going away. I know it can cause a while to recover from that but surely not that long! My doctor also said that if that was it I'd probably have a high white blood cell count and more respiratory symptoms but I'm not sure. I've heard doctors don't know very much about it.

Anyway, I'm just wondering if chronic fatigue syndrome can cause these symptoms. What makes me suspect it is that it came on after a virus and I do test positive for a past Epstein-Barr infection. Sorry this is so long but I try to be as detailed as I can. Thanks for reading.

 
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Old 09-17-2012, 10:24 AM   #2
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Re: Not typical symptoms but could this possibly be CFS?

Hi. I've had CFS for 30 yrs. but don't experience the dizziness & nausea that you & some others on this board do. You're right, a mystery disease only in the fact that there's no test for it, yet. Your fatigue, near fainting & needing to eat more are all that I experience. Of course some people must experience some symptoms and other people some others, but I would think the fatigue is the main one. For me it's the fatigue & the headache. I would love to find a doc who would at least say this is what I have. Maybe someday. I'm hoping & praying this will be diagnosed & treated like Fibromyalgia just became recognized, especially by the government. Try going to a rheumatologist to see if you have Fibro also, because mine said that if you have one you have the other. So I was able to apply & now receive SSD because I'm unable to work. I hope for the best for you.

 
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Old 09-17-2012, 11:31 AM   #3
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Re: Not typical symptoms but could this possibly be CFS?

Thanks so much. Yeah, I get tired really easily if I don't get enough sleep but it's not like a severe, unrelenting fatigue. I have a lot of the symptoms that can sometimes be associated with CFS but very few of the main ones. I also don't have any pain. The only time I had body pain was when I had that virus and my back and ribs were very sore. My back hurts every now and then but it's not severe.
The only reasons I was thinking CFS are that it all started with a virus/flu-like illness and I did test positive for past EBV exposure. So while I'm pretty sure I don't have CFS specifically, I think my problem is kind of similar and I'm still just having complications from that illness.

 
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Old 04-30-2013, 04:08 AM   #4
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Re: Not typical symptoms but could this possibly be CFS?

Did you test for hiv? Not to scare you but if it is a virus -

 
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Old 05-01-2013, 11:08 AM   #5
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Re: Not typical symptoms but could this possibly be CFS?

I was tested for HIV and hepatitis C recently, both were negative.
I have been on antibiotics but not before I developed the symptoms. During a couple doctor visits they found that I had a UTI and I took Cipro.
I saw one doctor last month who was almost certain my symptoms were caused by anxiety and somatization (mental stress turning into physical symptoms). He told me there are really no conditions that would fit the pattern and range of symptoms that I've had, and at my age anything that possibly could would be incredibly rare. I usually get angry when they say "it's anxiety" but he had a different way of explaining it that reassured me the symptoms ARE real, not all in my head, and I'm not crazy. He prescribed Zoloft, which I have been taking for nearly a month, and I am feeling a lot better. For the past month I've been able to exercise and do a lot more than I used to do.

 
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