I don't even know what to title this

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I got diagnosed with mono back in Decemeber for those that don't know. I was very sick at first, and then I started to feel a lot better as time went on with very few symptoms for awhile. I thought I was finally over this. Recently like 5 weeks ago or so I started to feel really strange. The best way that I can expain it is like feeling "off", disconnected to those around me, confused, stumbling over my words, and messing them up when I speak by saying them out of order or something. Even feeling in a state of daze, I just do not feel like myself anymore and I hate it. This has been happening to me almost daily now, most of the day. Short of a few hours or so where I feel okay. I am back to feeling extremely tired no matter what I do. I can wake up from a night of 14 hours of sleep and still be ready to go back to bed. All I want to do is sleep anymore. I have been having issues with my right eye bothering me with twitching, and being blurry at times. My eye doctor has no idea why. I have seen my doctor over these concerns and she is literally at a loss. She calls me her "mystery patient". Which is not comforting for me. I see my counselor every two weeks, and I take prozac for anxiety. So I am making the right moves in terms of trying to heal but I just can't seem to get there no matter what I do. The tiredness I can literally feel behind my eyes it is that bad. I have also been waking up many days with a bad headache that I cannot seem to get to go away unless I take medicine which I hate doing. I am at a loss here, and do not know what to do. So I came here for some support because my doctors do not know how to help me. They have ran multiple tests etc and nothing comes back. The most discouraging thing is that my wedding is this October 17th so I would like to be having fun planning that, and enjoying that process but instead I am sick and battling all this. Has anyone else experienced these things, and if so what did it feel like for you? Did it get better fast or not? Did you ever find anything to help you get through it? I try and resume normal life activities such as hanging out with friends and family and going to events but I do not find these things fun for me anymore because I feel so weird no matter what I do. So I would rather be home feeling this alone because none of them understand me when I say I just feel weird and "off". Someone please HELP!!!!!!

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  • Posted

    Hey Ashlie,

    I'm sorry to hear that you are having a hard time. I was diagnosed with mono last June but had been feeling strange symptoms since last January. I can tell you that I still have days that I don't feel 100% and that's more than a year later. Some days I feel a heavy fatigue for no apparent reason, my stomach still bothers me some nights and I also have been diagnosed with an overactive bladder. I did not have any of these issues prior to mono. I think the body gets stressed and the immune system probably suffers a bit and symptoms can linger. I think we are seeing that now with some people's personal stories about Covid-symptoms lingering for many months.

    Perhaps this triggered some sort of Fibromyalgia or CFS for you, but I'm sure that this too shall pass. Time and rest are your two best friends-also trying to manage stress levels.

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    • Posted

      Hi Eric,

      I am ok. I may actually make a separate thread about this but I recently found out I also most likely have Celiac disease. My tests for gluten all came back abnormal. Apparently the only way it can be absolutely confirmed is with a biopsy, which I am not too eager to do.

      I am not sure if EBV triggered this issue with gluten or perhaps I have had Celiac for years and been none the wiser. Apparently some people have no symptoms and many people don't even have GI symptoms.

      I am wondering if some of the symptoms I thought may have been lingering due to EBV have actually been because of the gluten.

      Might be worth looking into....

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    • Posted

      But also worth noting Eric-I also think some of this is just post viral symptoms. Just maybe some of mine were due to the gluten...I'll probably never know. I may have had issues with gluten for 10 years for all I know...I have had a sensitive stomach since right after college. I also have a cousin who cannot eat wheat and my dad cannot tolerate gluten-but he does not have Celiac.

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