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share your ebv symptoms

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hi everyone. i have posted quite a bit of discussions but this one will be explaining my mono experience as a whole and if you can relate great, please comment some reassurance or similar symptoms. i’m 19, always in good health, until In october 2017 i got plagued with mono. i had the classic fever, sore throat, achiness, weakness, and fatigue. I thought the nightmare would end but i truly never felt better after that.

my symptoms with chronic ebv have been:

-nerve pain all over body (tingling, shooting pains, jolts)

-back pain

-neck pain and pressure

-sensitive scalp

-ringing in ears

-mouth sores/bleeding painful gums

-on and off sore throat

-sharp pains in lymph nodes

-rib pain

-heaviness in rib/chest area

-to the bone FATIGUE

-dry eyes

-extreme health anxiety

-one bout of mild oral thrush

i have been a hypochondriac since birth. i suffer very bad ocd. i convinced myself this is cancer or hiv (even though i have negative tests). i am BAFFLED how little doctors know about chronic ebv and their is barely any cut and dry info about it online. It’s like a chronic condition only those suffering understand and is very lonely. It’s very easy to let our anxiety wander and make us think this is something more sinister. anyways, please comment your symptoms of chronic ebv. use this forum to vent! i need to read experiences of others.

1 like, 105 replies

105 Replies

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  • cullenhall
    cullenhall Guest

    Posted

    Hello everyone,

    my wife is 44 and was diagnosed with EBV 6 weeks ago and she still has a swollen painful neck and fatigue. She has now developed a cough and her chest hurts when she initially wakes up but it slowly goes away. Is this normal? She has auto-immune diseases so we are very concerned about taking her to the hospital due to the covid-19. Just flying a little blind right now and could use some advise.

    Thanks in advance!

    • Gina1114
      Gina1114 cullenhall

      Posted

      hi i also developed a cough and turns out my thyroid became enlarged with cysts and nodules. i never had issues prior to ebv.

    • Gina1114
      Gina1114 cullenhall

      Posted

      hi cullenhall,

      just to add i tested pos for ana for autoimmune post ebv as well.having another ultrasound to see how my thyroid is coming next month.doctor saying csnt be tied to ebv i disagree. like i said i never had issues priof to this.

  • joint_entropy
    joint_entropy Guest

    Posted

    Hi everyone.

    I'm 23 yo .

    I get infected EBV and mononucleosis in December 2019. It's all started with cervical lymph nodes swelling a little bit (at first something like a bump appeared on the neck). Feel ache near spleen, there was a slight temperature, but the condition was not that bad (continued to work and study). Since then, and now I feel constant weakness, but it seems I’m already used to it. Tests show anti-EBV-VCA lgM=12(pos)).

    • In January 2020, the pain decreased and feel better.
    • In February, the cervical lymph nodes grew stronger, and throat discomfort appeared. Re-made analyzes: anti-EBV-VCA lgM=8(pos), anti-EBV-VCA lgG=16(pos), anti-EBV-EBNA lgG=0.69(neg), anti-EBV-EA lgG=1.1(pos).
    • By April, lymph nodes began to hurt in other places: new places on the neck, chest, a little pain in the liver (before it didn’t hurt at all, and the tests for it were good).
    • By the end of April, there is less pain on the neck (almost no discomfort when swallowing now), but it slightly aches in the chest, under the armpits, it seems a little discomfort has appeared in the inguinal lymph nodes (but not sure about last one).

    In my opinion there is obviously negative dynamic.

    I'm freaking out about this: worried about a bad scenario related to oncology too, but afraid to go to the hospital and take tests because of COVID-19...

    Is there anyone here who has encountered such a dynamics of symptoms?

    • anetta85562
      anetta85562 joint_entropy

      Posted

      Yes. I got it from my daughter in the fall as well. My tests were negative! The symptoms linger and it made my sinuses and ears more reactive-they clog up with allergens now. This causes inflammation and starts to affect lymph nodes around my neck, shoulders and chest. Constant gall bladder/liver sensitivity-had to give up fats and some other things. Main symptom dizziness and ear clogging, now also sore throat. Awful. I take magnesium glycinate, that is basically all I can handle. If not the gall bladder I would take monolaurin.

    • laxmi17422
      laxmi17422 joint_entropy

      Posted

      Hi,

      I am freaking out about difficulty swallowing ! Did you have it as well ?

      Regards

  • frank1326
    frank1326 Guest

    Edited

    I was diagnosed with EBV in Sept.2019, I'm 36 yrs old

    I had all the regular symtpoms, most have gotten better, some not:

    -Fever

    -Fatigue

    -White Tongue

    -Head Pressure

    -Dizziness

    -Tongue/Roof of Mouth irritation

    -Sore throat & difficulty swallowing

    -Tingling in Arms

    -Swollen & Sore Lymphnodes

    • bash24999
      bash24999 frank1326

      Posted

      what does head pressure feel like ? its on scalp or behind your head ?

    • frank1326
      frank1326 bash24999

      Posted

      Hi Bash,

      I usually felt the pressure on the top & rear portion of my head, on either side. Sometimes on the temples too. Never really a scalp issue.

      It felt like a pulsing, light headache. On-off, On-off, sometimes on one side or the other. I also felt stuffy headed overall, like my head was a balloon getting inflated.

      My doctor sent me for a CT Scan to confirm everything looked Ok & luckily it did.

    • Pattydel
      Pattydel frank1326

      Edited

      I get sharp shooting (almost like an electrical current) pains that come and go in the back of my head which seems more deep. I looked up symptoms and says it could be from inflammation which seems to be the norm with this virus. I had CT scan of my head and all good.

  • diana47518
    diana47518 Guest

    Posted

    Hello! So I got mono back in January and I can say it has been a long painful journey. It all started with a very bad tonsillitis, then everything that you described started, plus swollen spleen and liver. Because of the liver they also discovered that mono gave more complications which was Hepatitis A. At first I stayed home 2 weeks on antibiotics that didn't work for me and I got to a point when swallowing was impossible and I couldn't even drink water due to intense throat pain. Then I got hospitalised for another 2 weeks. The doctors treated me well, with vitamins, cortisol, penicillin and some other medicine for oral candidiasis (due to antibiotics). Keeping my sanity was very hard, but I had my family and my boyfriend who supported me even if they were very worried about my health. I still got days when fatigue hits me, I have swollen glands and I still have a diet for the Hepatitis.Only the ones who had mono, know what we went through. My good thoughts go to all of you and I wish you all the health in the world! kisses from Romania.

  • hannah92048
    hannah92048 Guest

    Edited

    Hi,

    my experience with EBV has been horrendous. All of the symptoms that you have listed i have encountered and potentially more.

    It was almost as if i got up out of bed one day and without any prior warning i just felt unwell. It first began in January this year, i am 23 and it has ruined this year up to now for me. I had 4 weeks of feeling half human and I honestly thought that it had gone away and it is now flaring up again.

    I find that when i go to bed it when i get the worst muscle twitches, they are relentless and something that occur most nights.

    I spent months thinking that i was dying of something serious and that i was being mis-diagnosed. EBV was detected in my blood test back in Febuary and i was advised that they couldnt tell if it was current or something from the past.

    It has effected me both physically and mentally, i have experience severe anxiety and brain fog. i also feel constantly bloated and a pressure around my rib cage area.

    There is a whole lot more to my journey with EBV. i felt a lump in my throat and as if i couldnt swollow and my saliva was pooling in my mouth, i also had an endoscopy to confirm there was nothing more sinister occuring there also.

    I really hope that you find something that helps with the symptoms.

  • emilie1989
    emilie1989 Guest

    Edited

    My EBV symtoms are so crazy and I actually ended up in the hospital with pericarditis from it. Its been 6 months now and im not getting better.

    i also have:

    high number of eosinophils( 49%) supposed to be under 10.

    bad liver numbers

    constant high pitched white noise in my ears

    mouth sores

    extreme fatigue

    besides that i was also diagnosed with hypothyroid and Insulin resistance after I got EBV

    Im 31 and 6 months ago before i got EBV i was the healthiest ive ever been. Im vegan, never eat sugar, soy or processed food. Im An athlete, non smoker and never drink.

    Ive tried everything to cure myself. every possible supplement and weekly b12 injections. nothing helps. last test my EBV numbers were still sky high.

    This has ruined my life. some days im so sad all I do is cry because i feel like my life is gone.

    • nathan04973
      nathan04973 emilie1989

      Edited

      hey everyone its a hell of a virus I have a number of symptoms including flu like ones and ringing ears headaches but there starting to die of but I have horrible IBS like symptoms and am wandering has anyone developed really bad costochondritis along with internal tremors and very vivid dreams night sweats? Before this i was in very good shape rock climbing and doing parkour i had to cancel my nhs training as well due to the malaise and fatigue which has also starting easing of after 5 months but am scared to push myself incase it flares up again how are people getting on i heard it can take a long time to recover from which isnt good as i suffer depression and am developing really bad health anxiety never imagined in my wildest dreams this would happen so your not alone Rachel i can emphasise coming from an athletic back ground i want my life back to.....

    • Gina1114
      Gina1114 nathan04973

      Edited

      so i thought i was loosing my mind when i started with internal tremors and also have malaise and fatigue. i work full as a physical therapist assistant so my job requires alot of activity. i used to go in bathroom and cry trying to figure out how i was going to get thru my day grrrrr.i had a reactivation secondary to antibiotics for a ear infection ( turns out it was ebv causing my ears to clog and ring) so that set me back 4-5 months. i also had horrible digestive issues as well brutal. i wander what is causing internal tremors? does anyone know ?hopes this helps your not alone .

    • nathan04973
      nathan04973 Gina1114

      Posted

      Thanks Gina I appreciate the reply i was actually going to be starting training as a physio hah but going to have to defer for a year by the look of things... sorry you had to spend your day like that no one should have to... I have pretty much had every symptom myself, as you have mentioned its good to know am not mad like my doctor thinks but they are starting to die down hoping this is a sign of recovery still a long way to go along with the strange health anxiety i have developed. with regards to the internal tremors I looked at some academic journals and it seems mono can effect the nervous system in some people so i think that explains the horrible tremors we seem to be having.

    • Pattydel
      Pattydel nathan04973

      Posted

      I was diagnosed in June of 2019 with EBV, but I believe I had it months prior. I had horrible night sweats along with many other symptoms. I felt like I was finally better in April 2020 ( the worse symptoms was I had a low grade fever for almost a year with horrible fatigue). I recently became sick again about 3 weeks ago and was on two strong antibiotics which were not working and the night sweats along with fever, although not constant like before, have returned along with cough, and sinus issues. I am at a loss and getting frustrated! I am wondering if my doctors are missing something or this is normal! Best of luck to you!

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