10 months on and looks like mono is here to stay, i hope im not alone.

Posted , 7 users are following.

Hi, i am a 21 year old male and i was out at the weekends a lot beginning of last year, making the most of the time i missed out on during covid. Then i noticed neck glands swelling up in the middle of april. I had really bad tonsilitis and then tested for epstein barr virus. I don't even feel like the same person I did this time last year. I could go out every weekend with no issues and now even just a full working week is enough to wipe me out. I had to cancel a lot of plans over the summer and be very careful picking and choosing what activities i did with the energy i had but I always had read online you will be okay after 6 months and that isn't the case. Upon reading other peoples experiences with this it seems that it is massively downplayed by GPs and they don't seem to understand the impact it has on your whole body so i thought i'd share my symptoms since the diagnosis.

Brain Fog - comes and goes in waves but can be horrendous

Fatigue - Felt like i have had 1 hours of sleep even if i had 10

Lower general mood - Thinking theres improvement but constantly being knocked back is draining

Aches/Pains - Waking up like i have done a triathlon the day before when i did nothing

Swollen glands - Never disappeared in my neck on one side. A bit smaller but Sometimes ache but have had an ultrasound which came back fine.

Trouble sleeping - never had an issue with this beforehand and now always wake up in the night for months and months which makes symptoms worse.

Itchy Skin - Randomly all over body which comes and goes in waves

Sensitivity to light - This seems to have improved a bit but sometimes made my eyes burn

Sinus problems - had sinus issues around august which havent gone away and sometimes cause pressure headaches, antibiotics didnt work for it.

Tremors/tingling - This is also a little bit better but happened for a fair few months mainly in jaw and hands

Lower left abdominal pain

Ear ringing

Some symptoms pass and new ones occur over time it seems

Getting covid also seemed to reactivate things

I have been back to the doctors a few times and just get told im a healthy male and the repeat blood tests are all fine and just say "its the glandular fever or stress". I felt very alone as the nhs website has no mention of anything like this and seeing the stories on here helps so i am trying to add to that.

I have a situation with a very ill parent at home so i feel bad complaining about myself when thats nothing in comparison.

I hope one day i can go out without worry of being wiped out for a while afterwards and get back to enjoying my young life but not sure what to try and health anxiety from the situation at home makes things worse.

0 likes, 13 replies

13 Replies

  • Edited

    Hi ads.

    having a lot of symptoms in 10 months is quite normal . I have seen others (on Instagram) that have recovered 2-3 years, completely.

    In addition, having Covid can make it relapse ass lengthy.

    The recovery is not linear. you may relapse a few times.

    However, be conservative in doing physical activities, because overdoing can make it worse. You might have already realized by experience that exertion can flare-up symptoms for the next 72 hours. So, have in mind the delayed nature of this illness: have a realistic estimation of the amount of activity your body can tolerate sustainably (you have to count every step, hours you sit, stand...) and try not to push through your energy limits. Over time (might be much slower than you expect) your activity tolerance improves.

    Rest whenever you can, and the best rest is to lie down, preferably with your legs elevated (like leaning to the wall).

  • Posted

    your not alone i definitely get you on all of this. it freaking sucks! i got mono last year in feb and literally havent felt like myself ill have good and bad moments and im always at the doctors and they always say " all your tests look fine" as for your symptoms i definitely can relate to some. mine seem to change. my biggest one is breathing and fatigue on & off and my lymph node seems to bother me a bit. and i get to burning throat on & off. etc;..i hope you feel better!! my next step is to see a infectious disease doctor, have you been to one?

    • Posted

      Hi, i hope you feel better soon! no i didnt know about those

    • Posted

      thanks! & i would say to try going to one it could help

  • Posted

    I feel you bro, my new symptom is itchy skin , especially itchy back, i have this s**t from late September, some symptoms are gone like neck pain, fever, but still feeling mailaise, dizzy head, light sensitivity , it looks like I'm intoxicated. Did a lot of tests brain MRI , spleen, lungs, kidneys, everything is fine I don't know, doctors don't believe in me anymore they think I'm too sensitive.

    • Posted

      im starting to feel itchy skin lol do you feel a burning sensation? also have u ever had (burning mouth syndrome?)

    • Posted

      im having all the exact same bro

  • Posted

    Have now had tonsillitis for over a month and has come back after taking a course of antibiotics, to be honest i dont think my tonsils have ever been quite right since i had EBV, is this normal?

    • Edited

      I am in 22th month of mono. When I get very tired in a successive days of excessive activity and am just near a crash, I feel some kind of inflammation/soreness somewhere deep in my throat. I think mine is deeper than the tonsils, but maybe it happens in different spots in different people.

      How is the status of your mono now? Do you still have fatigue and brain fog?

    • Posted

      Hi, my tonsils are swollen still and yes sometimes feels more in the neck.

      Fatigue and brain fog just as bad as they were, seem to muck words up a little bit and stutter too.

      hope youre okay

    • Edited

      I had a lot of unforeseen exhausting activities last week, which caused a crash, and now I am again trying to find/establish a working baseline. But the last couple of days I have been researching about the role of blood clots in post-viral fatigue syndrome.

      I believe that, at least in my case, the main root is blood micro clots. Many of the interventions that I have found to work for me, from my own experience, now I have read that they are also used for treating blood clots.

      for instance, sitting for prolonged hours and with bending knees causes pain on my foots, calves, and toes, much like covid-toe, and at the same time causes bad brain fog, while elevating my legs relives the pain. cold shower helps me, mild to moderate aerobic exercise helps me, while intense exercise even for very short period of time worsens my symptoms, foods like turmeric, green tea, olive oil ... helps me. Staying hydrated and avoiding caffeine helps me (and avoiding alcohol helps others with my condition, but I don't consume alcohol ). These all are known to cure blood clots too.

      I believe that my prediabetic condition in addition to excessive exercise, when was added by the reaction of my immune system to the virus/vaccine, caused micro clots to form in my blood.

  • Posted

    I can see that your post is quite old now. Was there light at the end of the tunnel?

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