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6 month update and thoughts.

Posted , 7 users are following.

Rbhtx
Rbhtx

Hey folks,

A little backstory - mild symptoms started around mid-September into late October (which makes sense since apparently the incubation period of EBV is 6 weeks), but I started having defining symptoms that made me feel like death on November 5th, so I use that date as my anniversary. 

I'm a little over 6 months in at this point. November and December were absolutely awful. I couldn't walk more than 10 steps without feeling extreme fatigue. I now have a newfound respect for that word - "fatigue". I had all the other classic symptoms of severe mono: feeling like you've been hit by a truck, severe body aches all over, fluctuating temp, vertigo, dizziness, nausea, feeling out of it like I'm observing from an alternate plane, etc.

For the first week of January, I somehow felt completely fine. At that point, I thought the virus was gone and I started enjoying life again. I had zero symptoms. Unfortunately, once that one week vacation was over, all my symptoms came back with about 80% severity from the initial onset. This stayed for the rest of January and all of February.

Starting March, I've been seeing some improvements. For the first 3 weeks or so, I would go through alternating weeks where I would feel mostly fine vs. mild fatigue and mild body aches (where it feels like the normal flu), I can't believe I'm so desensitized to pain and fatigue now. But yes, it was a zigzag pattern that showed improvement.

For the last week of March, up until today, the fatigue and body aches went away but they've been replaced with low-grade fevers. So now, I'll have an entire week or so of feeling completely fine, with a mini relapse of low-grade fevers and general malaise for the following week, and so on. 

So yeah, I just wanted to share my experience. I'm still not out of the neck of woods yet but I AM seeing improvements. The low-grade fevers are a little annoying and worrisome because I haven't seen anyone else on google or forums post about having these low-grade fevers 6 months+ after onset. But I have a feeling it's due to the virus.

1 like, 10 replies

10 Replies

  • ebvreactivated
    ebvreactivated Rbhtx

    Posted

    Hi, 

    I have developed low grade too and it's been since January. The elevated temperature knocks me down. 

    The strange thing is that my symptoms started in May but the low grade fever started in January so after 8 months.

  • christina31300
    christina31300 Rbhtx

    Posted

    you're not alone with the low grade fevers! got sick around the same time and ever since i have ran a low grade fever on and off throughout the day being around 99.6. i can totally tell when this happens as well because my body feels warm. 

  • vancityraincity
    vancityraincity Rbhtx

    Posted

    WOW! Our stories sound so similar. 

    I also started getting mild symptoms in September / October and it KNOCKED ME OFF MY FEET nov 10. Was doing better in December, then 90% relapse in January .. with gradual zig zag sloow recovery. My symptom now is feeling like I have a  mild flu constantly .. and night sweats on and off. 

    Like you, I now have a new respect for FATIGUE and how we take doing small things for granted. I am about 75% recovered, still get achey if I do lots but I’m able to do lots compared to being bed bound for weeks. Today, I did some heavy duty cleaning of the garage and house, cooked, etc. 5 hours of physical work lifting etc.. not bad. 

    THIS was the most difficult thing I’ve been through so far.. so many times I felt helpless and scared of not getting better.. but it will happen. Happy 6 months everyone LOL. Blessings.

  • craig07920
    craig07920 Rbhtx

    Posted

    Hi Rbh,

    So sorry to hear you've been going through such a terrible time with mono, just want to reassure you that you will get through this and will get better. At 6 months my improvement was only minimal too, after a horrendous first 3 months. It is normal still to be having this low grade fever, I had it throughout too but just to reassure you that it does go away - it took me 9-10 months to start to make full and proper recovery, it's different for everyone though and hoping yours is much quicker - but key thing to remember is that you will get better, and don't panic if it takes a bit of time still that can be normal, but the intensity does lessen as time goes on until you get to full recovery. One day at a time, vitamins and plenty of rest!

    Craig

  • liam43296
    liam43296 Rbhtx

    Posted

    This has happened the same way with me. Started in November when I would get aches and pains in legs, then at Christmas I came down with a horrible flu, that left me bed bound... the doctors then told me I’ve probably had Glandular Fever, and ever since, my fatigue has been up and down, and have had low grade fevers.. generally have 2 weeks of fatigue, then a week of feeling better, then fatigue again, but always feels less intense. I’m sure I’ll get there eventually. smile 
    • craig07920
      craig07920 liam43296

      Posted

      You will get there eventually Liam, you will I do believe that - I know it's hard to see right now, this does get better with time though let me reassure you.

      Craig

    • vancityraincity
      vancityraincity liam43296

      Posted

      You will get there for sure! Your up and down pattern of feeling good then bad then good is what I’ve been through and from my extensive searching seems like many people go through. Just enjoy the good weeks for now and when the bad ones come think of them as part of the healing .. and relax. If you feel sad come on the forum because this thing is so nasty emotionally.. people don’t realize how hard it is for a person to not be able to do stuff because of a VIRUS !
    • liam43296
      liam43296 craig07920

      Posted

      Thanks Craig, your posts have genuinely made the anxiety side of the illness a lot less intense. Thanks.
    • liam43296
      liam43296 vancityraincity

      Posted

      Thanks! Yeah I’ve done a lot of reading about it, and a lot of people have this Zig zag recovery pattern. I’m a lot better than I was (though today my legs are pretty weak again) but i do seem to get better each time. The anxiety has disappeared now, my glands keep swelling up in my neck and then go down. It is such a horrible virus, definitely the worst experience of my life, but I’ll get through it, like everyone else reading will. I had really low Vit D levels a few years ago, which made me feel like this, and recent blood tests showed that it was low, but not too low, I’ve always wondered if there is any correlation with the length of my recovery, and having low Vit D. I’ve been taking supplements though, and they haven’t had a major effect.
    • craig07920
      craig07920 liam43296

      Posted

      Thanks Liam, I know how hard it is to go through it so just want you to know there is light at the end of what seems like a long dark tunnel when going through it!
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