Is it normal to struggle with mono for months and years? Any statistics?

Ears, nose and throat
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(This text got way longer that size is too big planned, sorry. If your in a hurry my questions are at the bottom :slight_smile: )

I (norwegian man age 26) have been sick with mono for over 8 months now. For me it started a bit like a flu, but I never had a sore throat or swollen glands, so it took a few weeks (a bit over a month i guess ) to get the diagnosis. I had positive IgG and IgM tests. So I got some info about mono from my doctor and went home and read about it online. From what I learned i was expecting the acute part of the mono to last a few weeks and after this i could expect to go back to work. I also read that I could expect a bit of a fatigue after the acute part, which could last a few months and usually no longer that 6 i think i read.

After about six moths or so I started worrying about that I might have something else than mono. I went to my doctor and he agreed. Partly because i have had two nearly healthy periods, one week this summer and a few weeks this autumn . He said that this was not typical for mono. Except for the two periods where i felt pretty OK, I have been way to sick to even think about going back to work.

I usually am so fatigued that i have to think about what i am making for dinner because if the dish is to advanced (read: more that 4 ingredients :P) i don’t have the energy to sit and eat it. Today it was my turn to make dinner for my family (I live with my mother, father, two sisters and brother now that I am sick), and so i made oatmeal porridge, i think they laughed a bit, but did eat ofc . Also my symptoms are muscle ache, head ache, mucus in my lungs. I sometimes feel out of breath even though I haven’t done anything that should be exhausting. I have lower back pain when i push my self to far(go to the store, make dinner etc), also my face gets very hot. I am also a bit light sensitive. Also my brain is a bit foggy. Today i threw the towel into the toilet after i had dried my hands. Strange :stuck_out_tongue: I took a picture for you!
IFile

So, all the tests the doctor gave me where negative (except the mono test ofc which now showed a previous infection) . He could not explain it, but he wanted me to stop taking Lexapro to see if it could be side effect of the drug (I started on it 4 months before i got mono, was feeling a bit down). But after some reading on this community, I feel like all of my symptoms seem pretty normal for mono. And that mono can be quite serious and for sure take some time to fight and get healthy.

So… my questions and thoughts that i need help with, and was hoping you guys maybe could take a look at:

Is it normal to struggle with mono for moths, without being able to work? I don’t think it matches how the disease is described. Not even on the article on patient.info. There it says “A full recovery is usual within a couple of weeks. Some people have a lingering tiredness that lasts a few weeks, sometimes longer.” Weeks, haha, more like moths or years?

Do you think i could safely consider not quitting the antidepressant and just assume that my symptoms are form mono?

Thanks in advance for you answers!

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Didn't get the picture to work. Maybe this will work! (or not) image

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yes its totally normal i was diagnosed in may 2018 with glandular fever after my health started deteriorating in march i was so ill, Anxiety, fatigue, muscle aches so bad it felt like my legs and feet were burning and so many more symptoms i quit my job in April and didnt return to work till August 2019 i still now have days were if i over do it the fatigue hits me like a tonne of bricks.i guess it takes time and a lot of self care, and a really healthy way of eating also. i feel im 85-90 percent back to pre glandular fever and im so greatful

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Its good to hear you are almost back to 100% lisa and back to work its so weird that most of us are happy to be able to get back to work when your whole life when you work you just want to be off of work lol. I hope it continues going in the right direction for you.

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yes ! most people suffer for 2 years . im in month 21 now . And yes its very common to go up and down . i had 2 months of being ok sept oct then after an evening out and then thanksgiving dont feel so great again . so yes it goes up and down! the rollercoaster illness ! because youre young youll probably get over it quicker . i sure hope so ... its an awful illness .... the pain and suffering is indescribable

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I am also in month 8. I am much improved, but wear out easily. Prior to mono, I was training for a triathlon...now I lift light weights and walk. It is frustrating.

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Im in month 4.5 and im struggling. The fatigue, muscle weakness, weird vision issues, tingling, tremors, vibrating in chest, my twitching all over, all sorts of stuff. ive spent thousands of dollars, visited 2 primary docs, 3 neuro's, still nothing else positive other than mono/ebv. Chronic EBV sucks..

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yes i worked out 2 hours a day before i fell ill... in the best shape of my life at 51. very happy and never really got colds or flu ... many runners olympic athletes get ebv .

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Sorry to hear that you too have struggled with mono. Glad you are feeling better!

Since I am considering to not stop taking the antidepressant, I kind of feel like I should now what the probability of this being mono is. So since so many web pages just describe mono as something that just mainly lasts for weeks, it feels like it could be something else. But now reading the posts on this community however I feel like the likelihood of this being mono is big. But why do the doctors say it is not typical of mono to last so long? And why do the web pages kin of say the same?

Are we one in a million?

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Hi Lori!

Thanks for the reply. And Wow, 21 months is a looong time to be sick. It must have been quite the struggle for sure. I hope you get better again soon, now it being Christmas and all. Hope you are right that I might have an advantage with my age. You say it is normal to struggle for years. That's what i was fearing. But why does it seems like it is not that normal when I read on medical web pages about mono? Do you have an article i could read or something, I might just be bad at finding good correct info or something.

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Ahh, that sucks Ash! Glad you are getting better though. Just for my curiosity , how old are you? Lori said that being young might help with a faster recovery. I was pretty active my self. One advantage of being an active type of person prior to mono, is that it is easier for others (an you as well) not mistaking the fatigue to something like just being lazy or just have bad health.

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Same here :/ Nothing else than EBV is seems. Luckily the health care in Noway is practically free so the money in not an issue for me, but sucks to be sick for so long though. I have not been to a specialist jet, just took a lot of test on the local medical station. Hope you are getting better soon!

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What is your main symptom Arne, is it fatigue? I can relate to everything you're saying. Glad to hear you have good healthcare, luckily i also pay near to nothing for medical care here in Belgium.

In a couple of days i will have been sick for exactly 1 year. Hope everyone gets better in 2020.

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Hi Maxim, and wow, one year anniversary, jeei 😐 Well, hopefully you're getting better soon! Yes, I would say fatigue is my main issue. I feel exhausted most of the time. When I am active, like hanging out with friends or making dinner, i often get muscle pain and almost a shortness of breath that reminds me a bit of panic after a while.

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yes most articles are not factual ... they say mono for 6 weeks or so . nowhere does it say 2 years ....its only from reading blogs forums etc that you keep reading the 2nd year is easier. i had it 12 years ago the natural dr told me epstein barr i looked online said 95% of people have it so i didnt think that was making me ill thought it was just like the flu? i had no mono or fatigue but couldnt leave the house be alone it was all mental . i thought i had ptsd after a bad accident . this time i realize what it is and its been so bad as i have mono with it . yes just keep resting dong push it ... i know its no fun but when you do push it you relapse.

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yes it causes anxiety and panic attacks . ive suffered since my last round of ebv 12 years ago it never went away .

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I had those panic attacks at 6 months in. They are a lot better now. So no reason to think the worst is going to happen. Even if that is what happened to lori.

Things get better at an annoyingly slow rate, just hang in there. There will be good days.

Like many people say, year 2 is better than year 1. We can't do anything else but hope this is true

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Hi Arne,

Yes all this is very normal with mono. What they should tell people is that takes 6-12 months with symptoms and then you spend the next year working your way back to normal. I got this in late 2016, my two granddaughters and my daughter as well. Our ages at that time were between 16-54. We have all had the long struggle back to recovery.

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Hi Arne,

The doctors really dont know, I think that their information is outdated. I think that maybe the virus has morphed into something stronger and longer lasting or maybe our immune systems handle it differently.

I was so grateful to find this website it really helps to know you arent alone. In addition to all the horrible symptoms, it causes a weird depressed mood along with the exhaustion and illness. You may have had that as your first symptom and assumed it was depression, I had a doctor tell me I was probably just stressed and tired because I had recently had my elderly mom move in with me. I knew I wasnt feeling right and tried to tell her I was sick. I landed in the emergency room two weeks later and was diagnosed with mono. What a terrible experience. I did recover though.

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I'm 40 years old. I actually just sucked it up for 3 months before going to the doctor. I started out by seeing my allergist because I thought my fatigue was due to my asthma. It took a crappy 5K time to convince me to go to my GP She figured it out at the second appointment.