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Today is my ebv’s first birthday. I hope it doesn’t make it to 2! 1st 3-4 months had low fever, fati

Posted , 8 users are following.

Clidecjay
Clidecjay

1st 3-4 months had low fever, fatigue, joint pain and bad gland swelling with 3-4 swollen lymph nodes right side neck(very stiff and pain in neck). 2nd month had the flu so everything was amplified and made even worse by my stress of not knowing what is truly wrong plus a little depression.---------*5-9 months- fever gone(except for a couple of sinus infections), gland swelling down(no longer a big fat face with 3 chins just 2), lymph nodes still swollen same size and bad neck pain on right side, still fatigued overall with new left ear popping symptom. More sadness and concern feeling. Just so sick of this!- 10th month--no more neck pain(lymph nodes still up but maybe a little smaller),not as fatigued, no more ear pain or popping, New symptom... swollen groin lymph nodes just a little with terrible pain in hips when walking.(I average 16000 steps per day) Just when you think you may have this beat this virus IT Kicks your ass some more. -11th month- ear popping back for a couple of weeks then gone, feeling even less fatigued, and pain in groin lymph nodes subsiding. My 3 neck lymph nodes are still larger than normal and i have accepted that they may always be. My feelings today and what helped me throughout. In all of my life i have never felt anything like this. Unless you have walked in our shoes no one knows how we feel. The medical community does not even understand this virus and we feel so alone in our battles. I think i have had every emotion possible in this journey. I will never be the same person i was. Some ways i will be better(empathizing the pain and hurt some people deal with-I have been humbled) and other ways i will never regain myself.Here are some things that i feel have helped me--Patience-the first 6 or so months i kept thinking this should be gone by now and stressing more. I know now it will run its course on its time line not mine. -- This forum has helped tremendously by knowing i am not alone and others have some of the same things going on that i do, even if doctors or google says differently. Also, this forum has Craig and others that give inspiration when we most need it. -- vitamins and supplements--i think i have tried them all..anything to feel better right? Not sure what has helped. I took a teaspoon of virgin coconut oil by mouth and applied it for itching and on painful nodes...seem to work and it smells good too! Definitely take Vit C and B-12. Olive leaf extract also helped me. REST, Try to eat, drink plenty of water, limit alcohol, and try to stay optimistic and think positive- you have to be patient! I know i will have some more down days ahead, but there seems to be hope now where as 2 months ago i thought i would not make it out of this . Best wishes to all. Stay strong for our group. chris

2 likes, 14 replies

14 Replies

  • david_65565
    david_65565 Clidecjay

    Posted

    Very well said , I'm in the same boat as you about 11 months into this nightmare . Went through a divorce 4 months ago after 25 years so i'm sure that didn't help . Stay strong we will get our life and good health back soon .

    Dave

  • lori93950
    lori93950 Clidecjay

    Edited

    chris

    that is so beautifully written i am going to save it and show it to anybody who doesnt understsnd what this is and what were going through.

    im at month 9 going into 10 for me or thereabouts and this is my 2nd time with it !

    yes, its a sad time ...i got this 11 yesrs ago with no mono i did get back to health but as you say ive not been the same since. .the panic and anxiety never went away ... but i did feel normal and like myself.

    wishing you and everybody else a speedy revovery

    • Clidecjay
      Clidecjay lori93950

      Posted

      Hey there Lori, how are you doing now may i ask? I hope you are ok. I got better for 1 1/2 yr but reactivated again. Cj

    • Clidecjay
      Clidecjay lori93950

      Edited

      hi lori, wandering how you have been lately. cj from the mono forum

  • craig07920
    craig07920 Clidecjay

    Posted

    Hi Chris,

    Thanks for sharing your story and for the kind words, I really do appreciate them and it means a lot the support you and others on the forum have given me through a tough year also.

    I know for sure after a year of this thing you can just feel so weary and drained of it all. Just a word of encouragement again that my experience of Year 2 was a positive one, it was SO much easier to live life normally and although my body was still recovering and fragile and I had to be careful not to overdo it, the intensity of the first year had gone and really was able to start feeling and living a much more normal life again. And as you say you become a much more grateful and compassoinate person for having been through it and realising that really we all are at God's mercy, we all need His help to get better and I know it was only through his grace I was able to feel better and recover.

    Very much hoping and praying your experience of Year 2 can be a good one too and that things can move towards full recovery. You've absolutely hit so many nails on the head with the things you're doing to help yourself, continue to be patient if you can I know it's so hard but just not putting yourself under any timescales or pressure can really help - your body will recover but it in its own time and just continue to hang in there and God willing you won't have to go through anything like that first year again.

    And Chris remember truly you WILL recover completely - I thought I never would but time, thanks to God, was a great healer with this thing. So don't worry if you are finding it hard to see your full body resilience or health returning, because it absolutely will. And your confidence and strength will return too, so don't give up and remember just listen to your body, be understanding to yourself and continue to take it a day at a time. Still rooting for you and fully believing in your recovery, hang in there Chris!

    Craig

  • Guest
    Guest Clidecjay

    Posted

    OMG our stories are exact!!!!!! ive had this horrible virus for a year and 2 months now. im 19 female and was healthy before this. my groin lymph nodes just recently (3 days ago) got super painful and i can definitely feel them. i was so scared this meant cancer or hiv or something. this virus is so scary to deal with alone. i feel your pain.

  • Dodge81
    Dodge81 Clidecjay

    Posted

    I'm 10 months in and starting to feel a bit more alert than normal. still have a feeling in my head and legs a bit jelly. Found out yesterday my girlfriend has been cheating on me, so that's the relationship over. I read on here right at the start that this virus can cost you all sort of things like jobs, relationships and friendship. I always thought my relationship would hold as I wasn't that reliant on my girlfriend to help me And thought it would only be couples where it all become too much....but I guess she didn't like that I couldn't provide her a normal dating life. Ironic as I'm starting to wanting to do a lot more....sorry doing want to start a new topic about my love life, but has made me realise that she didn't care so much for me anyway.....ugh to this virus.

    • lori93950
      lori93950 Dodge81

      Posted

      gosh im so sorry that she did that obviously not somebody you want to spend the rest of your life with.

      yes when youre sick for so long friebds disappear as nobody wants to be around somebody who is constantly sick. the ones that stick around are the good ones .

      my ex husband h as been coming to stay with me a few nights a week to alleviate things and also some company.

      i too am going into month 10 andhopefully this is a turnaround for you and you can start dating and luving life notmally again !

    • Dodge81
      Dodge81 lori93950

      Posted

      Thanks Lori....that has made me realise too.....has given me time to reflect, that since I've been ill she hasn't really cared about me, so whilst it hurts now, I'm hoping I can look back and say bullet dodged. I've still got my family and work colleagues who are very close and supportive to me, so I am thankful for that.

    • craig07920
      craig07920 Dodge81

      Posted

      So sorry to hear what's happened with your girlfriend Dodge, to have to deal with that on top of the mono must be so hard and just wanted you to know was thinking about you. If she was the right person for you then she would have been there for you and been understanding and supportive over your illness but it sounds like she wasn't and hoping very much that in a way it can allow you some time to just focus on yourself and your recovery and to rebuild again at the pace that's right for you.

      Hang in there Dodge, hoping for better times ahead for you and so sorry to hear about this turn of events.

      Craig

  • ravi40687
    ravi40687 Clidecjay

    Posted

    Your story and mine is same but I already passed this stage.All my lymph nodes are become normal now I can walk miles without any pain.what I am facing now is sore throat,athlete's feet on and off ,terrible white tongue but and dry mouth .one thing more memory and behavior changes .

    • Clidecjay
      Clidecjay ravi40687

      Posted

      hi ravi, i was going through some old posts and thinking about you! How are you doing now? cj

    • joe97594
      joe97594 Clidecjay

      Posted

      hi there i was reading yr story and i was how you doing with the low grade fever as i have same

    • Clidecjay
      Clidecjay joe97594

      Edited

      hi joe, i have had 2 reactivations. Both times the fever lasted 3-4 months. During the time it was on and off. I used aleeve and tylenol. Also, make sure you stay hydrated. I drank lots of powerade or lots of electrolytes. Also, you cannot drink any alcohol of any kind as it makes it much worse. Hang in there you will get better. You have to be patient and dont worry so much. i am here if you need meCJ

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