Mono need help

Hi Lisa, yes I had the weakness and pain along with the shaking in the night. I remember lots of nights like that but one inperticular. I got up around 11:30pm to go to the bathroom. I made it out the bedroom door but my legs buckled under me and my daughter caught me. I was so dizzy and weak with very painful legs , arms, hands, toes, fingers, shoulders and neck.

Try to think about what you want to do when you are fully recovered. I know how hopeless and helpless this virus can make you feel because of so many severe symptoms and the length of recovery time and the roller coaster ride of feeling improved and then back to feeling horrible!

Just know you will recover. Speak these words aloud so you can hear them several times a day. Because they are true. Your feelings and emotions will tell you otherwise. Yes it will probably take more time than you would like for it to.

I have been battling with this virus Since August 3, 2015. I am so much better. So many on this forum have kept me encouraged! I can now feel that full recovery will come.

Please don't push yourself!

Prayers for your recovery!

Rhonda

Hearing your recovery is so helpful! Did you do anything in particular or do you think you recovered with enough time? 

Hi Lisa, I too had some really bad random pains in my legs. I remember one night they were that bad I ended up getting out of bed and sleeping in a warm bath as nothing would take the pain off. Luckily that didn’t last long for me and I’m sure it won’t for you. At 9 months now and I’ve got high blood pressure (didn’t have before this virus) and having palpitations a lot. Cardiologist appointment next week to see what’s going on. 

I can just about manage a morning at work but then I get the washed out shakey feelings that you mentioned and a strange dizziness like my blood sugar is low. 

Definitely the more you relax and rest the better you feel. I really haven’t been able to pin point anything that makes the symptoms better or worse. Hang in there, it won’t last forever and you will be a stronger person in the end 😊

I’m having racing heart problems too but with almost too low blood pressure!! What is this virus doing to us!! I hope your doc appt can clear things up for you. 

I read that high doses of vitamin c is extremely effective against EBV. That’s the only thing left for me to try. 

Oh! I started a twitter account @MonoMom16 to share videos and tips for beating this. If you’re on twitter and into that sort of thing- give me a follow and I’ll follow you back! My videos tend to be on the honest side so there may be some colorful language thrown in But I figure the more support we can give each other the better. 

Lisa, I tried lots of supplements, herbs, juices etc. I really can't say if any helped. I still take a liquid probiotic . Probonix is the name of it. My Chiropractor recommended it. Studies say that the greatest percent of our immunity is in our gut. I also take coq10 and a Muscatine seed/peel which is an antioxidant. That is all I'm taking now. I could list many I've tried.

I feel time, rest good nutrition and lots of water best helps the body do what God designed it to do....heal.

You are welcome to private message me if you like.

I truly wish there was a medicine that would help. I found nothing really seemed to help my pain. It was so strange.

Rhonda

how recovered are you now?! X

Hey Lisa,

Really hoping these pains and horrible feelings when you're in bed subside and you can get peaceful sleep again, it's awful when you're affected like that. Remember everything like this is just a phase of the virus and it does pass in time - I know that doesn't help much when going through it. Rhonda's right definitely good to try and think about the things you will do when you're better again, and you will do those things because you will get better!

That's great you set up a twitter account to help people - what an amazing thing to do. I think there is a general lack of proper and professional help around this virus, here in the UK we have so many charities for different illnesses and things but there seems to be nothing for this virus. It would be amazing if one day something like that was available to support people who are having all the struggles with doctors and misinformation and things.

Craig

I’m so sorry the UK doesn’t have more info or charities for EBV. We don’t here in the states either. And I live 20 minutes from one of the top hospitals in the world! I want to change that. Desperately. I am stunned that my doctors having nothing to offer. 

Thanks for the support about the twitter page! I was going crazy not being able to create so it satisfies that part of my life a little bit  

Hi Lisa,

i used to google things and I just felt worse, so I don't do that anymore! I'm at 13 months and am doing a lot better, it will get better for you. I'm on the start of a good week 3!! I'm hoping these weeks will become longer and the bad times diminish.

takes time 🙄

I do understand Lisa and Caroline, I was the same googling things and worrying and thinking I had other conditions too, it's a horrible cycle to get into but totally understandable because you just panic about what you feel is happening to your body.

The good thing it is normal to feel that way - the virus is so debilitating and symptoms so intense at times that it's almost impossible not to let your mind think these things - but in most cases it's just the virus trying to do its worst and I'm certain that it seems to go through phases as your body is getting to grips with it, key thing is to try (much much easier said than done I know) to keep calm and remember it's normal to have these feelings and that it is temporary and will pass. Of course though it's the right thing to see the doc for examination and hopefully reassurance if worried - if there's any way one good way to keep your mind at rest is to have regular blood tests (if permissable through your doctor), that can keep on top of things as you recover and hopefully offer some reassurance that everything is okay other than the virus.

Craig

Craig yep. You’re totally right. And I’ve had so much blood work my good vein now has scar tissue around it! Haha! Today I’m getting my blood sugar checked. I’ve been on the keto diet for about 18 days and now I’m getting light headed.  Not sure if it’s connected but wanted to check. It’s supposed to help regulate blood sugar so it would be weird if it is making it too low but I’ll feel better finding out. 

My body aches less if I don’t stay in bed all day but it also worries me if I don’t rest enough. It’s hard to know which is best! 

I can’t wait for this whole thing to be in my rear view mirror! 

Hey everyone,

Yeah Lisa it's so hard to find the right balance between doing activities and resting. Listening to your body is the key, don't stop yourself from doing things if you feel able to, but also be sensible and don't do crazy things that take loads of energy and also make sure get plenty of rest before and afterwards if that helps - don't worry about it though is the key it's just going day by day and not looking too far ahead. You're also doing the right thing getting bloods checked for sure!

Christy, really want to reassure that you are not back to square one - I used to think that so often when I might feel a bit better then all of a sudden it came crashing down again - but it's just the way this virus recovers, it's zig-zag and actually the dips are I believe your body making another step to recovery, and in no way can it harm you as intensely or severely as it did when first infected. It can be so hard when catching a cold of anything else on top of the virus when in recovery, so just remember that your body is strong and will get through it and you're going to be sooo much better soon, I really believe that even if it's hard to see it now - hang in there!

Thinking of you guys - hugs!

Craig

Christy yep I have had two!  And now I think I'm on the brink of a third one, which is why I was so sick the last few days and even had a fever.  It stinks.  

Thanks Craig.  Wise words.  My blood count just came back totally normal.  White blood cells not elevated at all.  Sigh.  Good thing yes, but also so weird that you can feel so sick without anything strange going on with your blood cells. 

My doc was out of town and I saw her physicians assistant.  She was WONDERFUL.  Russian I believe.  She had a good sense of eastern and western medicine and she's been treating a few different people with prolonged mono.  She told me to take magnesium at night with a b-complex.  That it would help me sleep and can eventually (after a month or so) get rid of the painful limbs.  She also told me about an antihistamine that has a secondary effect that treats anxiety.  It's non-narcotic, not addictive, no side effects and can be taken as needed to help sleep.   The magnesium worked wonders last night.  I feel better today.  Not perfect but better! 

Oh good to hear you have a good doctor Lisa, that makes such a difference. Really hoping they can continue to be supportive during this period.

Yes I totally get it that it's good that your blood tests are coming back as normal but then it doesn't help in any way or give you any explanation for why you are feeling so unwell - had that experience too - but do take it as encouraging because this is a common course for the virus, after the initial few weeks of infection my blood tests always showed up as normal, except for one time a couple of years down the line when it showed a bit of a reactivation, but then that turned out to be nothing major either.

Hopoing the magnesium and B complex are helping, definitely wise to take those, I do too!

Craig

Thank you Lisa !! I was so worried about being regular people sick and ebv sick at the same time 😔