5 months in, relapse?

Posted , 9 users are following.

Hi all,

It’s been a while since I’ve posted on here - mostly because my anxiety lessened hearing others going through the same struggle, so thank you for that.

I also saw a slight upswing in my symptoms and thought I’d turned a corner. The last two weeks though, the virus has put me squarely in my place and I feel like I’m in the worst Groundhog Day ever. Almost all of my original symptoms have come back - blurred vision, breathlessness, unexpected bouts of being overwhelmingly tired - along with horrible cold symptoms, sinus and ear pain, neck and jaw pain, congestion, GI upset, etc. 

This is first so unbelievably depressing. I can’t wrap my head around feeling this way again or the idea of when I’ll get better.

What’s even more frustrating is that I reached out to my primary care doc, and she said it sounds like I caught a virus, as mono doesn’t relapse. She literally said to me, “that’s not how mono works, it doesn’t go away and come back.” This is contrary to everything I’ve read online and heard from folks on this forum.

She wants me to come in for an office visit on Monday to be seen for a virus or possible sinus infection (!!!!!!) and all I can think is she either doesn’t get it and won’t be able to help with the mono, or I’m going to die of sepsis from having this mix of viral/sinus infections.  Either way, my odds aren’t feeling great and I just feel SOOOOOOOOOOOOOO FRUSTRATED. Sooooooo very very frustrated. 

Also, as an aside, I bought this tea sampler pack - it had echinacea and some other “breath easy” etc type ones, and I’m too scared to drink them because of all the crazy warnings about people allergic to daisys or with liver problems. I know that sounds silly but I don’t trust my body to drink tea right now. Sigh. 

0 likes, 21 replies

21 Replies

  • Posted

    Ok first, I'm in a month 7 relapse and this post made me laugh, then sigh, then laugh again.  I think Stephen Hawking said something along the lines of life would be a tragedy if it wasn't so funny.  I HAVE ALL THESE SYMPTOMS AND ALL THESE THOUGHTS!  I even bought oil of oregano for like $40 and I can't bring myself to use it because I don't know if I'm allergic to the ragweed/marigold family! 

    I think the stupid relapses are normal.  And you know your body- do you feel like you have a cold or sinus infection?  Or is it that unmistakable mono feeling?  Because that crap is hard to miss.  

    I'm so so sorry you're going thru it.  The depression comes on so strong when you've felt like you've made headway and are saying goodbye to mono and then it pops up, unannounced and uninvited and you're like can't you  freaking leave already. It's the worst. I feel you.  And please god may some doctor make some brilliant discovery that like all this suffering is from eggs.  Or gluten.  Or some other stupid easy thing to fix. 

    • Posted

      Thank you so much for your response Lisa! It seriously makes me feel a thousand times less alone about not knowing if you’re allergic. Who knew mono could make you so paranoid?! 

      I honestly don’t know if it’s something plus mono or just mono. It definitely has the unmistakeable mono feel but I feel like everytime I hit a rough spot, it’s different. SO my anxiety is asking is it different mono or different toxic brain eating bacteria masked as mono? Where’s the shrugging emoji when I need it?

    • Posted

      Oh my goodness- when I went to the ER the first time, I was convinced I had a brain eating bacteria because I had jumped in my parent's lake the week before and taken a ton of lake water up my nose.  Everyone thought I was crazy! 

      I go around and around between thinking I'm over it and then getting super depressed and without all hope that I'll ever recover.  The only thing I know for sure is the bad relapses don't last forever.  And now I can feel my limbs sort of buzzing and getting slightly fatigued and that's a huge warning sign that if I don't rest I will have a full blown relapse.  It sucks because inside I'm full of energy and ideas and I want to do all the things but my body won't cooperate.  

      Hang in there.  This forum knows more than any doctor.  I've come to realize that and I'm so thankful for it. 

  • Posted

    Bjams, I’m sorry you’re going through this (again). The only thing I can say is that from my experience, relapses last shorter and are less intense each time.

    YeH, I know it doesn’t feel less intense. My last relapse I went to the ER again (sigh) because I just could not breathe and had horrible chest pains. When you’re going through it, it doesn’t feel any better.  But when you get out of the relapse, I can confidently say you’ll look back and think “well, that wasn’t as bad as it was the first time.”

    I understand your frustration with your GP. I went to mine about liver pain and I she said that last time I had a CT everything looked good (2 months ago). Well I didn’t have these pains and discomfort then sad( nothing was done about my concern and I left feeling very alone and frustrated that I’m feeling lower back pain for about 5 weeks now .. what can it be? 

    Bjams, the fact you’re having good days is a great sign. Hold on to that.. read RECOVERY STORIES on the web... it will bring your mood up and calm you down. That’s the only thing that soothes my nerves when I feel ill again. 

    • Posted

      Hi Van, 

      Thanks for sharing - even just hearing  your frustration does make me feel better, although I’m sorry you’re still having such a rough go of it. It seems insane to me that doctors would rely on a CT 2 months ago but it’s the same song and dance I’ve been hearing.

      Quite unfortunately, recovery stories seem to be drowned out in my brain by horror stories. Really truly, I’ve tried, but my brain interrupts with mono turned encephalitis, or virus gone septic. 

      I do hope we’re both one of those recovery stories soon though!

    • Posted

      You will be surprised how many recovery stories there are.. just have to sift through the bad ones. Also... when I read a story about someone being sick for 1-2 years I go look at their last post... everyone stops posting eventually... meaning they got better. When you get better and are enjoying life, are you going to be posting on support forums? Probably not, unless you’re awesome like Craig and want to bring comfort to other people. 
    • Posted

      I guess. I just tend to focus on the people who don’t recover. Another fun piece of what mono does to your brain I think?
    • Posted

      And Craig is awesome - definitely agree with that!
    • Posted

      This is SO true. But you really have to remind yourself of this when you are having a tough time and desperately seeking the web for reassuring stories. I actually had severe problems with endometriosis ten years ago and I remember frantically searching the web for phrases like "recovered from endometriosis", "free from endo" etc in hope of finding some positive recovery stories. But all I ever found were (of course) posts from people who were still suffering very badly, who's condition had gotten worse, had led to infertility etc. It absolutely devastated me as I got the impression that I was doomed to a life in pain and agony. But as it turned out, I eventually did get better, despite everything I had read and I haven't had a single problem with it since. I definitely consider myself cured. But of course, as soon as I was well I stopped returning to the endo forums, just like most people who recover do. It's the same with mono sufferers, except Craig and a few others =)  After starting this new battle with mono and reading Craigs encouraging posts I actually returned to my old endo forums and shared my recovery story. I was reminded of how much it means to hear other peoples recovery stories when you yourself are suffering.

    • Posted

      Thanks for the kind words Isabelle, that imeans so much for you to say that. I think because I'm going through a tough time myself with back pain at the moment it brings back the pain of other things in the past like mono and it makes me think well the least I could do is try and let people know there is hope for recovery from mono (because there is even though it can go on so long and be such a hard road for the months going through it).

      I know that road so much of searching for hope and recovery stories on the internet and then just coming across the kind of stories you don't want to read! After all it is only folk with the problems and the scare stories who really come on to post generally, but it's hard to stay away as you want desperately to find something to help yourself.

      Been having a particularly tough time myself too with back pain and this one I'm really struggling to get over mentally and physically - I seen a pain psychologist last week who tried to tell me I would be in pain forever, and I had quite a heated discussion with him telling him he can't say that to me with no medical knowledge of my situation, so I didn't accept that and have binned what he says because God is the one who controls things and can choose to bless people for recovery. People who try to take hope away or give words that don't encourage don't offer much help in my opinion.It upset me quite a bit but friends and family have told me to disregard what he says.

      Hoping you are feeling okay Isabelle and well done on going onto the endo forums and helping others - such an amazing thing to do!!! You are a total star!



    • Posted

      Hi Isabelle,

      I feel the same, Craig and others were so encouraging and gave me hope, when I had none. It is the reason I stay to let others know that there is recovery from this vicious virus.

    • Posted

      Thanks Mono, that's so kind of you - you have been a great source of supportive and comforting words to folk on the site here, even though I know three generations of your family have been suffering with the virus at the same time - amazing that you have taken the time to help others it really is and a great credit to you!


    • Posted

      I have noticed and I really appreciate it! I have sometimes even clicked through your latest replies to get a dose of encouragement from someone who has recently recovered redface It gives me hope! 
  • Posted

    Hi Bjams,

    Just wanted to let you know I'm thinking about you and feeling your pain, I know how hard that is to go through. At five months in, it is very normal I believe for this kind of thing to happen. I had many lapses like this in the first year, I want to reassure you that despite what the doc says this can happen because your body is still in the recovery phase from the virus, and although it feels just as intense my experience was it wasn't everyone back to square one because it settled down much more quickly.

    Really hoping and praying that things settle for you too Bjams, thinking about you and trusting God to bring you through.


    • Posted

      Thanks Craig! It helps to hear folks say this is normal and I appreciate your positivity!  

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