Dealing with mono 2 years later?

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My story

Need help.. I started my job at the end of September of 2018 and worked for about 3 weeks and then one day I felt like I got hit by a truck, In October of 2018 I was diagnosed with mono and ended up having to get my tonsils removed because I had constant strep throat.. all my symptoms lasted until around March of 2019.. I started to feel better but not 100%. I ended up going on trips & playing sports and had good times but still just didn’t feel like my normal self. Fast forward September 2019 I thought I was ok enough to get a job again. (Both Jobs had been in retail) I had also gotten about 3 weeks into the job when one day I felt like I had got hit by a truck yet again. Same symptoms of the time I had before. I left work and went straight to the doctor who first diagnosed me. Tests came back and said negative but my mono antibodies were still super high. I felt exactly the same as the first time I got diagnosed. At this point they didn’t know what was wrong and just told me to get better sleep and eat better etc. it is now may 2020 and recently got an adrenal test done after demanding . First test came back very low, second test came back normal but still low, and now just waiting to see on a third test. I have already gotten thyroid tests done which say normal. I feel like my body is giving up on me and don’t think it’s 100% mental I have anxiety and depression but I feel like 75% of what’s going on is physical somehow. My symptoms change day to day but mostly terrible fatigue, headaches, body pains and sleep problems (I’ve been taking Belsomra which seems to help). I have other symptoms too but I’d have to write a novel to tell them all because they just differ. I’m just hoping to see if anyone else might’ve had a similar story and could suggest anything. (Obviously because of the current pandemic it’s hard to go to any medical facilities but I just need answers, I would need to travel to get any major testing done but at this point it’s worth it)

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3 Replies

  • Posted

    Same story here been since 2017 tons of test tons of doctors tons of money no answers except hiatal hernia/gerd low vitamin d and my testosterone was low at one point but came back up on its on im sure it was from feeling so unwell. No answers no magic pill suppliment or medication to make me feel any better some days i just feel worse than other but i definitely feel better than i did the first 4-5 months i could not and did not want to do anything but lay on a couch.

  • Posted

    Hey,

    I too first got mono in 2018. I was unwell for a looong time.. started feeling much more like myself by summer 2019. So I have a question for you, did you have any anxiety or depression before mono or is this something that has happened since you got it? I'm asking because I used to never suffer so badly from anxiety or depression but it has been a problem since me getting mono. I have periods where it gets better and as a result I also feel physically better, have more energy, etc. Whenever the anxiety gets worse it's like all the mono symptoms come back. Anxiety can be really taxing on the body especially if its constant or very pervasive for long periods of time. Depression will also make you feel really tired. I'm not saying that it's the cause of all your problems, but it definitely could be the cause of some of it. If you're having trouble managing the anxiety and depression and feel like it's really taking a toll on you, going to a therapist or counsellor is very helpful (at least it has worked for me). My mono induced anxiety started turning into OCD because i was just so stressed about getting sick again... when that started happening I felt like i had mono again cuz i just wasn't able to sleep well, my body was always on high alert, super tired. etc. As soon as I learned to manage it better I physically felt better too.

    Even when I'm not anxious though, I still don't feel 100% and it has been two years since getting mono for me. Unfortunately, some of us just get stuck with chronic fatigue after getting mono. A lot of people panic when they hear that, but honestly, it does getter better over time. Chronic fatigue doesn't mean you'll have it forever, but it definitely will take a while for it to go away.

    I don't know if I would worry so much about getting tested for things, especially at this moment. If your mono antibodies were high it just seems like it may be flaring up, It's not that uncommon. If you feel the same way, as you were mentioning, it seems likely that that is the case. What other symptoms are you experiencing other than the ones you listed?

    • Posted

      i've had anxiety & depression for a while and have gotten used to it. some days its worse some days it not. you know how it goes. ive been taking medication for it though and i used to talk to some people but i didnt feel as if it was helping me. i was denied by a immunologist because he said i dont have any "immune" problems so im not sure if its ebv or ebv with something else. my main symptoms are fatigue, body pain, headaches, and sleep problems. my lesser symptoms are cold hands and feet, dizziness, breathing problems, and sore throat.. i know right now wouldnt be the best time to go get additional testing but i feel like if i dont find out soon whats going on i wont be able to come back from it. my levels just seem too much of a bad coincidence not to go through with more detailed testing. ive kind of found out what it "couldn't" be but i still dont trust those tests.

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