2 years of mono

Posted , 7 users are following.

Hello,

in April 2016, after almost fainting after swimming, I started to feel a bit weird, spacey, and tired. The doctors told me Im just stressed, so I decided to shrug it off. I was graduating at the time, I attended a few festivals, smoked marijuana, drank. At the end of August I extremely crashed. I didnt know where I am, who I am, who are my parents, it was like I was in coma, could not think AT ALL, but could move if I absolutely had to. I underwent all the possible tests, MRI, EEG, Hormone tests, biopsy of lymph node, and serology for infections like lyme (2x), toxoplasma, yersinia, HIV, syphilis, etc. The only thing that showed up was that I probably had mononucleosis recently, but it was supposed to be over. Since then the feelings have improved, but are still strong enough to prevent me from studying. I missed 2 years of university because of this and this april it would be 2 years since the beginning. Other symptoms were: join pains (not anymore), extreme eye floaters and blurry vision (almost gone), sharp sounds made my ears to "pop" (almost gone), pain in testicles (gone), (sex and masturbation felt weird, ejaculation felt like peeing, no pleasure), on and off low grade fevers (prob. gone), irritation in urethra after peeing(sometimes still now), sweat and urine had this weird smell like pasta (still have it) lymphadenopathy in groing and neck (still strong), arrhythmia when laying down (milder than before but still), mucus in the back of the throat (still), and the worst- extreme brain fog (still have it but much milder than in the begining) and extreme fatigue (still sometimes)

I must admit that I have some days that I consider good and few moments where I feel like before, but most of the time I still feel it, and I am exhausted and run down. Then every week there is some kind of relapse, where I feel really weird, disoriented like in the beginning, then I crash with extreme fatigue, and the following 2-3 days I feel like I have poison in my blood, sweating that smelly sweat and feeling like s**t. During these days I experience extreme depression, and I had experienced extreme anxiety which went away. However, they are not caused by the bad feeling I experience, but rather direct effect of the virus. I know those feelings are superficial and go away soon, but they overlap my normal thinking. After the relapse I feel super good for a few moments and then back to the mediocre symptoms.

The worst part now is that I fear that either I will never get better, or that it is something else than mono, since I did not get official diagnosis. I was just told by few doctors that I had it sometime when my symptoms started but it could no longer be it so long after. Other doctors said it could be it. I am so lost, tired and sad. Fortunately, over the 2 years there was no time when it would not be improving.

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  • Posted

    I feel you. I'm about 1 year into this, my lymph nodes are still very painful and swollen, I still have mucus and brain fog. I'm very tired and lost.

    • Posted

      It sucks man, hopefully you will get better much faster than me. I think there comes a certain treshold, at which you still have symptoms, but can somehow normally function. After that treshold, there will be bad days, but you will slowly fill the emptyness with activities, and gradually forget about this illnes, while the symptoms would fade away in the meantime. I think I am at the treshold right now.
    • Posted

      Hey Catchthebus, I have seen your post. So dis the mucus and brain fog disappeared in the last 2 months? 
    • Posted

      Still thinking about you both Brent and Lob and still believing that God is working for your recovery, more and more each day.

      Craig

    • Posted

      Well, there are good days and there are bad days. I always push too hard and end up having relapse. Im starting to get worried I might have caused all this, maybe if I rest properly from the begining, I would have been already healthy. Such thought are killing me, that maybe its all my fault and I did some permanent damage.

      How are you?

    • Posted

      I am exactly in the same situation. I probably pushed too hard also. I have worked through most of this illness. I am afraid also that I did some permanent damage. I pray that we will all get better. I can relate to having times when I don’t think I can do it anymore.
    • Posted

      How are you brent? Im feeling low again at the moment think im having a relapse sad
    • Posted

      Hi Lob,

      It's hard to find the balance of activity and rest for sure, it's so hard I know but please don't beat yourself up you have done nothing at all wrong, you haven't caused this and haven't caused permanent damage. Everyone with this virus tries to get on with life and often does too much at the beginning, I was the same, but I was still able to recover given time - and I know it's been a looong time for you, but it's not your fault it's just been awful circumstances and illness and the time will come where it is all over and you won't feel this way always again - just wish the doctors and things were giving you more help as I know it's been a real battle.

      Craig

    • Posted

      Sorry to hear that Poppy, hoping you feel much better soon - remember take care of yourself, you are going to get through this and feel better again - a blip is just that, and it will pass over.

      Craig

    • Posted

      Hang in there Brent, thinking about you still and 100% still believing in your recovery. Circumstances suck so much at times, when you try to do so much and can't seem to make the progress. Today was a joke for me I went to see a pain psychologist and they tried to convince me I was going to be in pain all my life - I was disgusted and appalled and put him straight in no uncertain terms that he was talking garbage and God can do marvellous works of healing on any of us.

      Believing in your healing too Brent, hang in there and thinking about you.

      Craig

    • Posted

      I am sorry that you are going through so much pain. You have been such a cornerstone for everyone on this site. I truly admire your faith. I thought I had strong faith until this illness. You continue after all these years to encourage those people around you. That speaks volumes about your character. You are truly a blessing from God.
    • Posted

      I am a poster child for what not to do. I am still struggling. I believe I have permanently damaged myself. I have all the symptoms of cfs. Unrefreshing sleep, blurry vision, sensitivity to light and fatigue. If anyone is reading this, please!!!!! Take the time to rest. I have worked through most of this illness because I have always considered myself a strong person. Big mistake!!!! I was afraid of losing my job and not being able to support my son. My life is now changed forever. I have always been a person of faith, but I am starting to get very tired. I long for just being able to sleep like a normal person. I never thought in my wildest dreams that I would ever get this sick for this long over a kiss. I have taken so many supplements that my body is starting to reject anything I try. Sometimes it feels like it is the end . I am not trying to rain on anyone’s parade, but this illness is more serious than what doctors say it is.
    • Posted

      Thank you for your supportive and kind words Brent, it really means a lot. Believe me my faith hasn't been as strong as it could or should at this time especially, I have imploded a bit with my own situation and coming on here is a kind of therapy for me too to try and stir up some hope and belief that everyone on here will get through their troubles with God's help. I'm tired and weary too Brent, I know you how you feel and just want you to know that I'm thinking about you and still believe that God is going to help you through, and wants you to remember that it's not your fault you got this illness and you didn't handle things wrong by trying to get on with life, and He will bring you out of it.

      Praying for God's hand and favour for us all today Brent and thanks again for your words of hope and wisdom.

      Craig

       

  • Posted

    I am roughly over a year and have experienced a lot of what you are going through. A lot of the symptoms are starting to slow up some. I am just holding on and believing God that one day this will be over for all of us.
    • Posted

      Without doubt believing in that Brent, that God will heal you - I know it's so hard to see when in the midst of this trial and that you've had such an awful time - just want you to know still thinking about you and believing 100% in your recovery - most definitely and more than ever.

      Craig

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