venting about my struggle w Ebv

Posted , 5 users are following.

hi everyone, it’s me again. i am having the absolute worst time of my life since getting this virus in october 2017. Everyday i am greeted with a scary new symptom. my most common are nerve pain, joint pain, muscle aches, rib pain, chest heaviness, swollen glands all over body, stomach pain, sore throat, slurred speech, sharp pains in head, neck pain, head pressure, on an off sore throat. my new ones are puffy painful gums, splitting in vaginal area during sex (which has never happened to me and i’ve been cleared for every std by swab and blood at least 4 times). every day i have a new symptom and for someone with health anxiety it’s really getting to me. i have good days but it feels like i’m never truly pain free. i am always aware of my symptoms. is this really all ebv? my skin is so sensitive now in my intimate areas and any stretching results in tears. i’m only 19. and i also have hashimotos because of this virus. i really just need a doctor to study me and figure out how to fix me. i’m young and want to be able to enjoy this time of my life. this is truly devastating to me. i’m so scared i’m just going to die soon. that it’s cancer or hiv or something sinister. idk what the intentions of this post is i just need to vent and need some reassurance

0 likes, 6 replies

6 Replies

  • Posted

    so sorry youre going through it ... yes its absolutely awful .im at month 10 and have had enough !

    i was having a few good days here and there but very infrequent and now seemed to have relapsed . im single should be dating going out having fun ...but no im mostly lay in bed just suffering .

  • Posted

    Hi Nicole, I'm nearly at 8 months is and also 10 weeks pregnant. I'm in total hell too love, I totally feel your pain. my symptoms over the last 8 months have changed constantly, it's like a fun new surprise every couple of months and most of them totally weird and unbearable!! The latest flare up gave me horrendous stomach pain that I actually went to hospital after a week of agony!! when that subsided I got crippling muscle cramps in my legs and a feeling all over like I'm just coming down with the flu. But the symptoms I've had to deal with over the last 8 months have been a catalogue of torture. I think we all have that feeling of grief for the life we're missing out on, wanting to go outside, be active enjoy the sunshine, you don't realise how much you just miss the normal everyday stuff till you can't even get up the stairs anymore without feeling like you are made of lead!! x

    • Posted

      gosh you are so right ...watching people lead normal lives going out to dinner laughing enjoying friends is so frustrating when all we do is lie down and rest.

      sometimes i just want to rebel and think screw it going to go out or go for a run ..

      but i just cant . if i can make it to the market and back hold onto the cart its a big deal .

      its absolute hell and no life whatsoever .

    • Posted

      So true, I feel so jealous of people who are normal and enjoying life. My other half jokes that I should be loving not working, but I'd love to be at work full time and doing all of the housework than be suffering like this!! It's like the worst full time job ever having EBV!!! I took my little boy out to lunch yesterday and had to rush him to finish in the end, the loud noises in the cafe were making my head feel weird and dizzy and then I just crashed and needed to get home, it's just miserable. I can't plan anything even a day before because I don't know if it will be just a crappy day or a seriously crappy day!! My family are suffering too, my husband has a completely absent wife, and my 11 year old boy has been picking up the slack with housework rather than playing out with his friends after school, so I'm a pretty rubbish mum right now too, lots of frozen pizza and baked beans on toast. I feel so guilty!

  • Posted


    i did not heaf of this ilness b4

    how did you get diagnosis ?

  • Posted

    Hi Nicole,

    I really want to offer some hope and reassurance regarding where you are and the future following this awful time you have been through. Virtually all of the symptoms you describe are ones which affected me significantly during the virus too, joint pain, nerve pain, gland pain, rib pain, aches and pains all over different parts of the body, fatigue, low grade running fever, and just generally not feeling well.

    It truly is an awful thing to go through Nicole and after 14 months it is only understandable that you would feel so weary, discouraged and scared. The thing I really want you to know is that all these symptoms most definitely can be caused by mono and in no way does it mean anything else or more serious is going on. I know it's hard to not think these things when feeling so unwell - remember Nicole for some people it can be quite a bit into the second year, maybe about 18 months before they start to feel a change and much better - so please know that there is hope and recovery times for everyone is different, for some people it's maybe about a year, for some people it can be longer - but even after that length of time people do make a full recovery from this thing.

    Coping with this at such a young age is extremely tough, but it is an advantage that you are young Nicole and your body has amazing recovery powers - I do believe that you are going to have much healthier and happier times in your 20s - I am keeping you in my thoughts and prayers and just hoping for a breakthrough and for things to really turn around soon - hang in there and remember what you're going through can be very normal with mono and it is very normal also to go on and make a full recovery even after a year or more of horrible times with this - so there is hope. Very much hoping there can be a good doctor you can see that can offer some real help, insight, support and reassurance. And don't hesitate to go back to them, even with someone you know or trust well for support, that can really help.

    Do keep in touch and still believing God is going to pull you through this tough time and make you well again.


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