Even the strong are vulernable- EBV-1 Me-0
Posted , 5 users are following.
Hi ya'll-
I really contemplated posting on here since I've completed fallen apart most recently. Back to square one these days. All the credit goes to EBV.
Initially I came on here to find others that were on the same journey as I. I am incredibly grateful I have found this site and chatted with others alike. I have always tried to stay positive for ya'll even at my worst moments. Who am I kidding though? Even the most strong are vulnerable, EBV has the best of me. Help me fight this fight, are you feeling well these days? I am truly struggling lately, I am feeling like I did the first 3 months of becoming ill with this monster. Malaise is back almost full force and I can hardly get out of bed and I'm incredibly fatigued and weak. I haven't slept well at night for over year. My memory and brain fog is affecting my work something terrible lately. I'm incredibly exhausted from the internal tremors that just won't let up. Every single solitary day since July 1. I reached out to the Neurologist today, hoping for a recommendation of any kind. My face and ears feels like they are on fire, my face is beat red sometimes.
I truly hope I don't drag anyone down with this post. I just needed to vent I guess, and hopefully someone out there reading this will understand my frustration and sadness from being so incredibly sick for far too long.
I truly hope and pray you all are doing well.
Until next time.
2 likes, 12 replies
Mono_too EBVfighter
Posted
Hi EBV fighter,
I am starting to feel better, I have been miserable since February/ March, it's so difficult to believe but you will start having a few better days and then the fog just lifts.
You will recover it's so hard to believe when you feel this bad but it will happen. In my experience it takes at least five months to start the process, until then its rest.
EBVfighter Mono_too
Edited
Did your memory take a huge hit? I mean, I couldn't even remember where my dad lives the other day when I was thinking of him. Couldn't remember where his house is or what it looked like. He's lived there for well over 5 years. Eventually it came to me but how incredibly scary. How can something like that be completely erased from my memory out of nowhere.
It's affecting my job something fierce, and memory is essential where I work.
I started taking Omega 3's for brain support, hoping this helps. It's been a straight week of supplements and no change.
From the very beginning of this monstrous mess, I'm now in my 14th month. It's so hard to have faith this is going to pass.
Praying for all! one day at a time!
Mono_too EBVfighter
Posted
A little brain fog, I have a family member that felt very forgetful after covid for awhile, its getting better 18 months out.
saba2012 EBVfighter
Posted
ebvfighter, yes the memory issue scares me sometimes too, it goes like completely blank, like you are saying everything is erased, it comes back after few minutes but is blank in that moment, my face too get red, and my ears too, isn't that crazy, and feels like they burning, of course we understand your frustration, we all in this together, if not here, then were should we vent, the doctors don't get it, and like you've said in your blog, i too gave up on conventional doctors, we got this, stay well and keep posting
martine25248 EBVfighter
Posted
Hi EBV fighter,
sorry I haven't been in touch for a bit! I had my neuro appointment and he was very helpful and sympathetic, but did say that my symptoms were very unusual but did attribute them to mono in the sense that it would be far too coincidental that all of this would start randomly at the same time that I had an active EBV infection, so agrees that this is all part of the post-viral illness. He said that my brain is clearly having a very hard time and is screaming at my nervous system in panic, which is why I'm getting all of these neurological and neuropsychiatric issues. The bottom line is that medicine is waaaayyyy behind in understanding the mechanisms behind why these post-viral syndromes happen as with long-covid, but that they can create debilitating and completely disabling symptoms for a long time. He wants to send me for a barrage of further tests including in-depth auto immune antibody tests, auto immune encephalitis tests, a more in-depth MRI, an EEG and a couple of others, to rule out anything there. If those tests are clear, he would like for me to see an immunologist as the next port of call. He believes that in some way or another, it is the immune system gone rogue that is causing all of these symptoms.
On the other hand, I have improved a little overall and have had more good days and the internal vibrations have lessened in intensity and frequency. However the last two days have brought horrible waves of doom, panic and unexplainable anxiety. This is a new symptom for me and all of the other symptoms have had a resurgence. I'm hoping it's just a set-back, but after a better couple of weeks it's very disappointing. Sleep is another thing that is getting me down, I don't think I've had a good night's sleep in 6 months! it has got a little better in the last 4 weeks, but it's always a struggle. I'm just uncomfortable all night! tossing, turning, sweats, burning skin, feeling unwell, constant repetitive dreaming. I usually only get 6 hrs and that is poor quality. Plus I used to be able to nap frequently in the day before mono and now I find it impossible to fall asleep in the day unless heavily medicated, if i try i wake moments after beginning to fall asleep in a blind panic with heart racing, it is simply awful, so i no longer try, no matter how tired. You mentioned that your sleep is poor, how so for you??
saba2012 martine25248
Posted
omg martine, your neurologist really went in depth with all the issues and explained it, yes i agree that all the neurological and neuropsychiatric issues are too coincidental that everything came together at the same time, please keep us posted how your tests went, my sleep is also poor and not deep that i'm rested, also i can't take a nap any more at day time unless i'm on meds
Mono_too martine25248
Posted
Hi Martine,
EBV thrives on stress, I have noticed that before doctors appts and tests this feeling happens to me also. When the test results come back you will start to feel better, fear of the unknown is a very powerful stressor.
martine25248 saba2012
Posted
Hi Saba, just out of interest, what happens if you try to sleep in the daytime? are you able to fall asleep at all? I just can't do it, no matter how tired, my body will not go to sleep! if I take gabapentin I can, but only for half an hour. without medication I just can't it's like something is stopping my brain from falling into sleep!
saba2012 martine25248
Posted
martine, before ebv I just get sleepy, tired, at nighttime you just automatically get tired, at daytime if you tired you just lay down and take a nap, now, no way,
my brain is not wired to get sleepy or tired and just take a nap, i can't fall asleep at daytime, same here for me, and i know i'm tired, just like you are saying, something is stopping the brain from falling asleep, and this was never the case before ebv, i could take a nap in the car, i don't know what's going on, but i don't like it, i can only go to sleep with medication
martine25248 saba2012
Posted
I'm exactly the same Saba!!! i don't understand what is causing it, but i used to be able to sleep whenever i wanted to in the daytime, but now its impossible and i just can't understand why! i find it really stressful because im tired and wish i could just sleep through this illness, but something happened in my brain and sleep is now a total nightmare!!
saba2012 martine25248
Posted
martine, yes I'm so puzzled by this and have no explanation whatsoever, yes it is so stressful for me too and I'm too tired and I just can't lay down, close my eyes and go to sleep, every night is a ritual for me, i take my sleep meds and hope that they working, lay down, it has to be dark, quiet and start meditating and praying that i hopefully go to sleep, and how you suppose to function when you don't get quality sleep, yes it is a nightmare
EBVfighter martine25248
Posted
Martine- I am so happy for you that your doctor actually did their job and are sending you for further testing and workups with the specialist! What a sense of relief it must be to be looked after.
I am still working with the Neurologist, EMG in a couple of weeks. Vibrations are still full force and have been since July. Brain fog almost daily and my memory is trash anymore.
My primary ordered an ultrasound of my thyroid recently and it showed a 9mm solid isoechoic TR 3 nodule and enlarged thyroid. So I am off to see the endocrinologist in couple weeks as well.
I sure hope you get the answers you are looking for in this journey. Best of luck and keep in touch!