Mono Twice

Posted , 7 users are following.

Hi everyone. I am grateful to have found this site as I have been reading the comments for months. The stories and support have been reassuring.

The first time I was diagnosed with mono I was 19 and in college. I presented with an extremely sore throat which later turned into a swollen spleen, drenching night sweats, swollen lymph nodes and extreme fatigue. I remember it was hard to even walk to the bathroom. I remember the whole thing lasting maybe a month or two and then life returned as normal.

Fast forward 16 years and I have once again been diagnosed with active EBV. It took many months and many doctors to get a diagnose. Finally a Rheumatologist though to check for it. However, this time has been very anxiety inducing. I have experienced a wide range of symptoms that have been lingering for eight months. I notice things are usually worse when I am stressed or near my menstrual cycle. I have experienced the following symptoms:

-fatigue/breathlessness

-tinging

-muscle stiffness, weakness, twitching

-hot flashes/facial flushes

-chills

-adrenaline rushes

-anxiety-almost feeling like I was on the verge of a panic attack all the time

-sensitivity to heat

-burning tongue/mouth

-ringing in ears

-itchy rash on arms

-brain fog/dizziness/off balance feeling

-shorter periods

-cold right hand and foot

-dry mouth

-chest pain

-joint pain

-heartburn/indigestion

Some of these symptoms have subsided while some are less intense but still lingering. I have good days where I feel about 80-85% and then I have some days where I only feel 50-55%. I constantly feel afraid that there is something more sinister going on because I cannot believe how long this has been lingering even though it hasn't left me as incapacitated as it did the first time when I was 19. I am not sure if it has presented differently because I am older and/or have some immunity now. Since finding out I have EBV again I have done a lot of research and have been surprised to learn how common it is for people to get this virus more than once or have the dormant virus reactivate and cause problems later on. There is a lot of good/recent information online from Functional medicine doctors about EBV. I am currently taking B vitamins and a probiotic. The B vitamins have definitely helped with the fatigue and the probiotics seemed to have helped with the tummy troubles.

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14 Replies

  • Posted

    hey olivia i am also 8 months into this thing and have basically had or still have most of those symptoms you have listed the ones lingering for me now is the sensitivity to heat the dizzy off balance feeling at times and the anxiety isnt as bad as it was in the beginning but i still can tell i have some anxiety from this i also cant believe this is all from mono and have thought numerous times i was dying of something...that panicky feeling lasted for a couple months for me its weird how some symptoms go away faster than others and some linger on for a longer period of time...i know im sure glad i found this forum too because i thought i was going insane as i have never heard of mono being this severe before..i hope this helps calm you i know the anxiety with this is awful but just wanted to tell you ive gone through the same things as you these past 8 months too i hope we can all start feeling better soon

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    • Posted

      i have also been doing light exercise and that seems to help with the anxiety part of this i know its hard some days but it really does seem to help calm down the nerves some if you havnt given that a try yet

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    • Posted

      Hi Katelyn,

      Thank you so much for the encouragement. I had no idea it could linger this long either. I feel like when I had it in college it was worse but done and over with a lot sooner. My biggest lingering symptoms are also dizziness/off balance feelings, occasionally getting flushed in the face (no fever ever though) and random aches and pains. Things seem to get worse if I am stressed, skip a meal or don't get enough sleep. It's like my body is super sensitive right now. Unfortunately, I wasn't even aware I had mono for so long that I was forcing myself to work out when I should have been resting. I do walk my dogs and try to spend some time outdoors doing light exercise. I just keep fearing that there must be something wrong with my immune system for me to not only have it twice, but have it linger so long the second time. Luckily, I have found many forums and blogs of people who have been in similar situations with EBV.

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    • Posted

      i also have aches still too in my spine and sometimes arms and legs..have fever off and on...resting is super important with this i have to rest alot still...im not quite sure if i have dry mouth but my whole tounge gets white expecially first thing in the morning i noticed

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  • Posted

    Oh Olivia I'm so sorry to hear that you're going through this awful time with mono again. I can only empathise as I remember how awful it was to go through it once, I just hope and pray that this just proves to be a short-term thing and that your body gets to grips with it again, it will still have all the tools to fight this thing from first time round so hoping and praying everything settles and you can get back to full health again.

    I'm sorry for not writing more today just been feeling overwhelmed myself at the moment, being going through a really tough time with hip pain and just feeling so down and struggling at the moment to see a way forward. But just wanted you to know I had seen your post and was thinking about you. Hang in there Olivia, praying that God will help us all on here.

    Craig

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    • Posted

      Hi Craig,

      Thank you for the kind words. It's been a long year dealing with this. Still no clue how I even got it again. Can't wait to get back to feeling 100%! Hopefully you recoup soon as well!

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    • Posted

      Thanks Olivia, that's really kind of you to say and I'm grateful for your best wishes.

      I believe you will get back to full health again, I remember how tough it was to get through a single day with that virus and getting through a year feels like a lifetime.

      Hoping and praying for much better times ahead, hang in there and let us know how you are doing.

      Craig

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  • Posted

    Hi olivia, I too went through a very tough time with mono. i want you to know that you will get over this just like you did last time. when EBV reactivates, it can cause mono again. sometimes those symptoms are worse than the first time you had it. It is normal to linger on for over 8 months. I felt close to healthy after 3 months, but then i had a major setback and ended up getting worse and worse, to the point where i was mostly bedridden, then I finally felt improvement around the 10 month mark, but my body was reacting differently than it should have, the doctors said that my brain was sending false signals to my body to make me sick, and my body had already defeated the virus, and then i had to get my brain and my body to learn to make me healthy and symptom free again. The medical term for what i had was called conversion disorder. It took me about a year and 4 months before i fully recovered and felt healthy again.

      This was only my situation though, everybody is different and what happened to me does not happen to most people. My doctors said they never had anybody with my excact situation. I want to let you know that your body will heal from this virus, and the different routes your body takes differs from person to person. 
    
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  • Posted

    Hi olivia, I too went through a very tough time with mono. i want you to know that you will get over this just like you did last time. when EBV reactivates, it can cause mono again. sometimes those symptoms are worse than the first time you had it. It is normal to linger on for over 8 months. I felt close to healthy after 3 months, but then i had a major setback and ended up getting worse and worse, to the point where i was mostly bedridden, then I finally felt improvement around the 10 month mark, but my body was reacting differently than it should have, the doctors said that my brain was sending false signals to my body to make me sick, and my body had already defeated the virus, and then i had to get my brain and my body to learn to make me healthy and symptom free again. The medical term for what i had was called conversion disorder. It took me about a year and 4 months before i fully recovered and felt healthy again.

      This was only my situation though, everybody is different and what happened to me does not happen to most people. My doctors said they never had anybody with my excact situation. I want to let you know that your body will heal from this virus, and the different routes your body takes differs from person to person. 
    
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    • Posted

      It's great to see a message from you on the forum here Young Boy, I have still been thinking about and praying for you these past few months and please keep in touch and message any time!

      Craig

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