share your ebv symptoms

Edited , 31 users are following.

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.

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  • Posted

    Hey Nicole,

    I was 25 when I took mono and had been fit and well before it, very active and into sports, running all sorts. This thing really stopped in my tracks and like you I got so down and anxious and worried throughout it all that something else may be going on, as well as dealing with the awful physical symptoms every day. Just remember Nicole mono has a habit of doing that, it can feel so intense that it makes you think something else is wrong when in most cases it just is the mono, and many of the symptoms you describe I recognise from my own experience of having went through it.

    I was starting to lose hope of recovery and thinking maybe things would never change, but thanks to God only I got there Nicole - it took time, it was into the second year before I was able even to work part-time hours and the start of the third year I think before I felt had the confidence to work full time again. It really did knock my confidence and when going through it I remember thinking I couldn't ever see my body being resilient again or being able to handle stress or lots of activity - but believe me Nicole your body does and will strengthen with time, it won't always be the way it is now and there is hope and recovery from this thing, even if it does take a year or 18 months or whatever for some to fully get there.

    Thinking about you and definitely encouraging others to post recovery stories and offer some reassuring words - I know how much I needed that when I went through it too Nicole - it's so hard and I don't think anyone really understand what it's like until they've experienced it, people think you're okay because you look normal and maybe see you out or whatever and don't truly understand how this makes you feel, physically and mentally.

    Talking to a counsellor / occupational therapist helped me during recovery too Nicole, if there is any opportunities for this kind of thing through your doctor or anything definitely would recommend that. And if you have anyone you trust, a close friend or family member, someone who is understanding and knows you well, please do talk to them too Nicole that helped me a great deal. You are going to get there with this, you really are.

    Craig

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  • Edited

    ive had all those and more. finally feeling human again after 3 years and strict diet change along with supplements. you will get there. but you need to basically make your body environment uninhabitable for the virus so it goes dormant. it robes you of b12 so pain and nerve issues can crop up. try methylated b12 and magnesium glycinate. its been a crazy ride.

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    • Posted

      Hi Rolane,

      I was really pleased to see your name pop up in a post, it has been a while for sure and so glad to hear that you have been doing much better. Goodness you went through such a hard time with this thing I remember and it really is life changing to go through it I know from my own experience for sure!

      Hoping that you are doing well and that life is generally going well right now for you and that you are feeling happy and free, and for many blessings from God to you and your loved ones this Christmas!

      Craig

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    • Posted

      Hi Nicole,

      Just wondering how you are doing today - and to remind you that you are going to get better and get through this. I know you and Madison and everyone on the site has been through so much - thinking about you still and hoping and praying for recovery and better times ahead. There is hope Nicole even though it's hard to see or feel it when things goes on so long - there's been so many people on here who I read that recovered fully but it wasn't until into that second year that they really got that breakthrough - so hang in there and believing God is there and going to pull you through.

      Craig

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  • Edited

    Hi Nicole,

    Our stories are literally the same! I am 19 as well and have convinced myself that I have cancer too! Deep down inside, I know that these symptoms are definitely from mono, even though they are on and off. I have been sick for almost two months now and I have definitely let the anxiety take over and I have completely lost hope of getting better! I hope you are beginning to feel better as well, and we can both get through this!

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    • Posted

      Hang in there Madison - this awful phase will pass, try not to look too far ahead or think too far back even, just cope with living and managing today, in the knowledge that things will get better with time.

      Distraction is good too so if you can do anything, even small things that don't take much energy or stress, to take your mind off it for a while that can help - for me it was just basic things like watching tv, going for short walk each day when able to, talking with family and friends, still seeing friends or if not able to talking with them on the phone or having them visit. I know it all sounds basic stuff but it really can help - and of course just don't overdo it get plenty of rest before or after doing anything. Hoping for a better weekend, and remember there is hope - God knows how hard things have been Madison and He will get you through this and heal you, I really believe that.

      Craig

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  • Edited

    Craig, yes. iI never thought id feel whole again. it takes so long you think this is your new life. aside from some minor thyroid issues that are resolving hopefully. I am doing so much better. I am back to working full-time. I go to the gym. And I could finally be the mom that I want to be to my kids with energy and joy. You are such an inspiration to making me feel like I was going to be a human being again. Thank you for your love for everybody and your understanding. And yes you will heal from this beast but it just takes time. But keep the faith and tell yourself that you are getting better every day and you will. Time will pass and it'll feel like eternity but you will get better!

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    • Posted

      Hi Rolane,

      So glad to hear you are doing much better, this is great news. And really thanks so much for the kind words I really appreciate them, still struggling myself at times and I need to do better with holding onto hope and belief that will get through my own issues at the moment, certain things have just seemed to hard to get over with my back, health and losing job and just hoping it's not always going to be this way and there can be a good purpose and peace, health and better times ahead!

      Your words give me hope Rolane and I'm grateful for that. And remember you've shown so much courage and determination to get through this illness yourself. so take great heart from that and wishing you and your loved ones all the peace, good health and happiness this Christmas!! Take care and do keep in touch!

      Craig

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    • Posted

      hello i was reading about your ebv and sounds similar to what im going through with my thyroid. need some insight about how long it took to get better or what you were able to do for it

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  • Edited

    Hi, I would like to share my symptoms… i got ebv almost 6 months back… still suffering…

    major symptoms i faced are body pain and that too sharp pain all over the body. mainly shoulder, back of the body &collar bone area. also sharp pain over throat area (not sore throat. i never had it). then tongue sores - this really scared me. it comes and goes. initially tongue got whitish. later it got better, but followed by mouth sores. also couple of times tongue was swollen. the other issue was underarm bumps (lymph nodes and pimples) and also painful lymph nodes under the chin. still i am suffering. either of these issues keeps on coming and disappearing. initially i did all the test and all results were perfect. i googled and learned about this virus and then i went for ebv & Cytomegalovirus test and got +ive for ebv.

    i learned that it manifest differently on different individuals. to be honest i was and am really scared.. but now after reading your stories, i am now optimistic that i will be ok one day...

    I would like to point out the other main issue i faced. Which was to convince the Doctor what i was going through. they were not believing what i was saying and they thought i was just exaggerating. since everything was normal in my blood test...

    Regards

    Jerin

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    • Edited

      ...the other main issue i faced. Which was to convince the Doctor what i was going through. they were not believing what i was saying and they thought i was just exaggerating. since everything was normal in my blood test...

      This. Had a couple of blood tests that came back clean. Doctor was clearly disinterested in my situation after that. Over a month later, my spleen and stomach were both terribly swollen and I was constantly sweaty. I returned to the doctor and, as we sat in the air-conditioned office, I pointed to the beads of sweat rolling down my forehead and asked: 'Does this seem normal to you?' The doctor was startled and immediately took my blood pressure (which was normal) and stated: 'Your arm is incredibly clammy.' I was then taken seriously and tested for EBV.

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    • Posted

      I assume they weren't testing for active EBV at first and were brushing off all my symptoms as some 'generic' viral response. I had terrible digestive issues and leg weakness for a few months. Maybe they thought I was exaggerating for time off work or something...

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    • Posted

      Leg weakness was severe for the first 2 months (unstable, drunk feeling) and then improved slowly over the third. Frequent thigh ache! Also, a weakness in abdominal muscle caused balance/posture issues that made walking a real effort.

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    • Posted

      thanks so much for replying i get frustrated with some of the symptoms and my doctor looks at me like im crazy. i work full time and its a struggle at times. are u taking any supplements ??

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