Grateful for this group

Posted , 4 users are following.

I found this forum a few days ago and am so appreciative of reading everyone's experience. It really helps knowing there are others who know exactly what this is like. I have found very little information about the neurological symptoms such as burning/numbness/tingling/pulsing/internal vibration and the anxiety. Holy —— the anxiety!!!!!! It is so comforting to know others have these same symptoms. The whole thing is awful but the neuro stuff freaks me out. I was dx with EBV beginning of September but was having symptoms 2 months prior. I would say I’m 5 months in at this point.

I’m moving in the right direction but it feels like I’m painting a house with a child’s paintbrush. My symptoms cycle. I have symptoms everyday but everyday is different, which is it’s own kind of exhausting. It’s hard to imagine ever feeling like “me” again. I’m so grateful to read comments from people ahead of me in the healing process. It brings hope❤️

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  • Posted

    Hi KCF,

    I was exactly the same - relieved to find this forum and documentation of all the neuro symptoms, because I've had almost all of the ones you listed and maybe a few more. And the anxiety...my God. It is out of this world. Mine has improved a lot since the first 2 months I was sick, but it's still a part of my life and remains very disturbing. I also found a lack of information and acknowledgement from doctors that this virus even HAS a neurological/psychological component, but as you would have found on this forum - so many of us have experienced it. You are not alone, and you will feel like yourself again - this virus is just a monster (and underestimated by the medical community).

    Hope you see improvement soon,

    Emma

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    • Posted

      I think just recently have more conversations about EBV been started. It seems that there are a lot of unknowns. I'm sure so many people go un-diagnosed as well, especially if they are above the age of 20 and don't present with typical mono symptoms like us.

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    • Posted

      Meaning most of us didn't present with typical mono symptoms and it took weeks or even months to get diagnosed. I also think a lot of women may blame these symptoms on stress or perimenouse/menopause and never know it's EBV.

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