Mono need help

You're not alone Christy, I know it's such a hard time for you and just hoping that you will feel much stronger soon - take plenty of rest and just listen to your body each day, some days you will be able to manage more than others, some days you might not manage anything at all and that's okay - you just need to take care and look after yourself.

Thanks Rhonda for the faithful and kind words....they mean a lot and help me too as I need that just now also!

Craig

P.S. Rhonda is right Christy try not to troll the internet for solutions....I know it's hard and it's a natural thing to do...we all do it but stick to places like this where hopefully the good will and the hope and faith will go a long way to recovery

Christy, I too have been through the very weak and shaky periods with this virus. Craig said it best about listening to your body. I had a few months of quiet intense weakness. I've learned to be kinder and more gentle with myself I've learned to set expectations for what I hope to accomplish very low so when I am able to accomplish more it is an encouragement!

You will get well!

Rhonda

Hi Christy,

?I had that sort of weakness, especially in the first six months and even now on the bad days, it is the worst weakness I have ever experienced, it is what caused me to go to the ER in the first place. I would wonder at times if my legs would hold me up. I thought there has to be something more, but only mono/Epstein Barr.

?My niece had this in eighth grade, she is in her 40'S now and she remembers it well. She said she couldn't lift her hands to wash her hair, she is now a teacher and when students say they have mono she is very sympathetic.

Wow that feels so good to hear. The fact that your niece had it and is now a teacher is stunning , that makes that she did in fact get better and live a normal life. Sometimes I feel so scared. The weakness can literally change me. Like I'll be so hungry on the couch but the thought of getting up and making a plate of school is even more exhausting. But I'm looking forward to this weakness passing very very soon in Jesus name. 

Also how is your weakness now ? Do you feel like your legs can hold you up now ? Did it get better ?

Hi Christy,

?Yes, it is much improved, I am 11 months in.

When I have the episodes of nausea I notice this is worse, so I am trying to eat a snack even if I don't feel like it, I have never really liked Gatorade or Powerade but picked some up when I was very nauseated and will drink a little if weak and it does help, so maybe a little low blood sugar from the lack of appetite in combination with the general weakness of Mono/Epstein Barr.

?My niece is also a long distance runner, and had two children so yes she did recover, she remembers it very well.

?I think people feel so scared because it is unlike anything you have ever felt in your life so you assume it must be something awful, I think we have all had plenty of colds, infections and flu's but this is something completely different in what it does to the body and how many different area's that it targets and then to add insult to injury you are told to drink fluid and rest, I am sure someday the doctors will figure it out, it can't come soon enough.

?

​I think the body is just working very hard to fight this virus and the fact that the virus can hide from the immune system, Craig had a good description of this, something about the virus changing shape and hiding form the immune system, hopefully he can elaborate on this for you. I read somewhere that the virus die off also may cause the symptoms or cause inflammation.

I didn't even know that wow, hopefully Craig sees this sometime soon and can explain what he meant. Thanks for putting it out there though :D

Hi mono,

i LOVE how you explain things, everything you experience and write about I completely agree. 

My thighs burn every night and it's now burning a bit lower down onto my lower legs too....is this the last of the fever burning off do you reckon??  I hope so!

​Mine is more of a jittery feeling than a burning, I have been taking vitamin D and I think it helps. It could just be the virus and the nervous system reaction.

 I was also thinking that maybe our bodies are reacting to the increased activity after being inactive for so long, Do you notice the feeling more after you have been out and about or swimming? I have just recently made this connection so I am trying to keep track of it.

Hi mono,

yes, a kind of fuzzy hummy vibration?! It's only when I completely stop and stay still that I notice it. It's weird isn't it.

My 'friend' thinks most people have this for 3-4 months, she has no clue and I think rather insensitive, people just can't seem to understand?! 

Hey guys,

I'm hoping today can be a good day for everyone and just a reminder to hang in there and that these tough times will pass over and everyone IS getting better from today - I declare that now in Jesus name!

Oh yeah mono that wee thing I said before.....it was something I either read or someone told me about the EBV virus, I have no idea if it's true or not but it kind of made sense to me.

If you imagine another virus, say just a normal cold or whatever, being a particular shape, like a square, then your immune system makes antibodies that lock with a square and then it nullifies the virus in your system and kills it. With glandular fever, if you imagine that the virus is a circle shape in your system, then your immune system makes antibodies to fit with and fight the circle, but the difference with glandular fever is that by time your body has made the antibody in the right shape, the virus has changed shape to another shape, say a triangle, then the body goes through the whole process again of making other antibodies and then the virus changes shape again, etc.

I'm sorry if I'm not explaining that very well.....but that would make sense why the virus has such long lasting effects. BUT the good news about that is that eventually the virus trips itself up somewhere along the line and changes back to a shape that it was before, and when it does that your body already has the antibodies ready to deal with it and can finally kick it into touch!!

Again, I've no idea if that's right or not but it makes some kind of sense in my mind - and it also means that there is hope that after being unwell for sometime with the virus that you can suddenly make a lot of progress and get much better in a short space of time.

Craig

Thanks Craig, that does make complete sense and sounds very true, which in that case, I've done round, square, oblong and circle and now I'm back to round! kicking it into touch!!! I am feeling like I'm really getting there!!😀

X

​Unless someone has had this virus. they really will never understand, 

​Do you notice the feeling everyday or does it come and go? Do you notice it more on active days?

your right mono, people won't understand if they haven't experienced it. 

if I over exert myself, I'll just feel worn out, maybe muscles a bit weak, feel a bit funny but that's about it. When I get in bed at night that's when my legs burn. The depression mood has really gone though now. I feel happy all the time!!!

Exactly. I try to tell people all the time, I get weak and tired if I over do it. I literally have people that tell me since I'm so fatigued I should go to the gym to get it out my system 🤦🏽??? Like what 

Oh wow, don't listen to them, that will put you back and make you a whole lot worse ( I know you know that)  

when my body says no, I know I have to stop. People can't seem to grasp that. I want to say I'm not making this up!  It's hard as people can't see how you feel.mand seem to think I should be better by now. I'm not a lazy person either, far from it!!! Never would I want to be sat around this long, I ache to clean the house, normal stuff, which is what I'm doing now and more, there are good days ahead....if you can just deal with now, own all those twitches and aches, before you know it, it will fade, slowly. Xx

Yess it just really upsets me because they're not living through it. Nobody understands like I desperately want to do things but I just can't (for right now). Can't wait for those better days to come !! Thanks  

do you also notice it when you lay down?

Hi, 

i am doing so much better now, it's only when I stop I sometimes have a humming feeling in my limbs but not bad, at one point they were all tingly. Every night my legs seem pinkish and are warm to the touch. But nothing to bother me really.  It's taken such a long time but I can definately see an end! Every symptom you have, someone here on this forum would have experienced it I'm sure, and to have it this long isn't unusual ( I gather) but everyone is different.

caroline