Mono recovery story collection!!

Nice Stokie! What do I search to find your blog?

Thanks for sharing that Craig, inspirational as always. How long until you were completely back to normal?

Hi Jesse,

Thanks for the message and just hoping you are feeling okay and just want to say that was a great idea to set up a page where people can post positive and encouraging stories, it's such a hard virus to deal with and it's important people know there is hope and recovery at the end of the road for everyone reading this who is or has been struggling with mono / glandular fever and just feels weary and tired and scared, which is more than understandable given the circumstances.

It is different for everyone, for me I would say the biggest turning point came around after 9 months, and although it still took a little while after then to feel completely normal I was able to live a much more normal life from then on, so long as I paced myself and still took care. It did still take me a while to get back working full time again, but I think my confidence and things were shaken a bit too in that respect, and it's important to phase things in and not just jump back in to the deep end, I think that definitely helps.

Everyone is different though, some people recover quicker, and often it's a zig-zag kind of recovery, where sometimes you can get mini set backs and wonder if you're back to square one - be assured that you're not if feeling that way today it's just part of the recovery process, and you definitely will get better - there is hope and recovery for everyone with this horrible virus, your body eventually gets on top of it and then it can harm you no more!

Hang in there!

Craig

Thanks for this, Craig very encouraging.

I think that's where my confidence and mood was knocked; the zig zag/ forwards and backwards of the recovery. You learn not to get your hopes up when you have a manageable day because you could have a horrible one the day after. It's really hard to accept and believe that your making progress hey! I'm currently at the 9 month mark and at the moment I have more good days than bad and feeling stronger and more like myself. Can I ask, how much longer it took until you felt fully recovered?

Hey Ste,

Yes the internet is a scary place for stories, this is generally a good forum for encouragement from people going through and who have been through mono / glandular fever. I do believe you are hopefully by the worst 6 months for sure, and that things will get better for you too, so hang in there it's just so frustrating that it can take time, but you definitely will make a full recovery I believe without any doubt

Thinking of you and take care

Craig

Thank you, Craig!

You're welcome Ste, thinking about you and believing you will get through this and get better, without any doubt whatsoever.

Craig

Thanks for this, Sophie! It sounds like you've had to work hard at your recovery. Interesting what you said about the supplements, I also take iron (slight deficiency) and d3 (precaution) and was thinking about taking some omega 3 too! Well done on your positive attitude, I think that's so important. Hopefully it won't be too much longer before you're back to normal, and you've already made so much progress

Thanks so much, I hope so! Yes I was advised to take omega 3 for joint pain etc so thought it wouldn't hurt! deff worth the try.

Inspirational once again Sophie - vitamins and nerbs such as Omega 3 definitely helpful would highly recommend.

Craig

Hi Sophie, 

Thank you for sharing your journey in such detail. I tested positive for an EBV infection in early March but quite sure I contracted it in mid January - so I am 4.5 months in... like you I was in great shape before I got Ill and have always considered my body as my temple....so having an invader take over like this is so hard to take psychologically due to the lack of control and certainly and then of course the physical symptoms, which as you say....worrying that they will morph into something more serious....

How are you now? I would love to hear from you. This forum has been so helpful when the medical system here only provides so much. I’m in Toronto, Canada and am a 48yrold woman.

Sending you and all sufferers good healing thoughts xxx

Kiki

Hi sophie hope your finally back to yourself by now  i know your posts rather old but thought id ask....how did your doctor check your neck for nerve damage? I mentioned this to my doc & he said GF doesnt affect your nerves?? I think this could be the case with me? 

Definitely agreeing with Poppy and hoping you are back to better and good health now Sophie - and thinking about you Poppy and Kiki today also, hang in there and remember this won't last forever, you ARE going to get better 100%.

Craig

What’s up guys, and thanks for sharing your stories everyone. I am a 14 year old boy in eight grade, And my mono story has been confusing for me and weird. So far I have felt unwell for about 4 months, and I first started feeling a bit more out of energy than usual in Middle - Late  January, and it wasn’t anything much, So I kept playing in my basketball games and practices, But I still felt a bit unwell and tired doing it, So this feeling stayed for a few days, and we went to the doctor and wanted to see if anything was wrong, he said he will test me for mono, but he doubts I have it because I would have more symptoms by now and I would be more tired. So we got the test results back about 5 days later, and I had the same feeling of “i feel a bit more tired and out of energy than usual”. But once my mom told me I had mono I immediately felt worse and then I actually started feeling sick, That week I felt a lot worse, (tho I never felt as bad as most people describe mono to be) and I didn’t have much of an appetite and that. but it’s weird because I never had a fever then, my throat didn’t hurt, I was still able to go to school, and my spleen wasn’t enlarged. Anyways so I felt the “acute stage” of mono for about a week, then out of nowhere I felt SO MUCH better as in almost normal, but I was back to the feeling of “I still feel a bit more tired and out of energy than usual”. So I did what any teenage athlete would do when I felt like I was getting better, and I went back into basketball practice. I was able to play for 2 days and I thought that I was close enough to being fully healthy that I was fine to start playing again, But after those two days I had a TERRIBLE crash, and had the worst day I have had, but then the next day I felt better, tho I didn’t feel as good as I did when I started to go back to practice. (By the way when I got my test results back, it was Jan. 30, now it is Feb. 10) , So after my crash, I felt better, but then it slowly started to get worse than how I had been feeling towards the end of February and beginning of march, my joints felt more stiff and I started feeling a bit more tired. I haven’t had to miss any school except for the one day of my crash, but it wasn’t improving at the rate I thought it would for how mild my symptoms had been. That kept up for a few weeks, and around the middle of March I had a step forward as I gained a bit of energy and now I started to hang out with friends over the weekends sometimes, and I could walk around town and to and back from friends houses without feeling worse after, Then end of March I had another small step forward where I felt like I gained a tiny bit of energy back, Then It slowly got a bit better through April, and even though I wasn’t able to do active stuff and activities yet, I was still able to hangout with my friends and walk around with them and stuff. I also got another small step forward in the middle of may, But then during school, I did a bit of jogging and some push ups, (too test myself to see if I could handle it), and then over the next few days i slowly started to feel worse than I had been, and then I felt like I had a setback, as I felt much worse Than how I had been feeling for the most of May, and I felt like my progress just went backward. This setback happend in the end of May and i still don’t feel back on track to where I was for most of May, I feel about the same as I did in the beginning of March and that has scared me because I have read some stuff on Chronic Fatigue Syndrome and how mono can turn into it, And i am very scared about that, also mentally I am always stressed and sometimes sad, and there is never a moment throughout the day where I don’t think about my mono. I would expect to be healthy by now considering that my symptoms have been somewhat mild, as I haven’t had to miss school, but it’s already been 4 months and my friend who had mono right before me had to miss 3 weeks of school but was fully healthy by 2 months. And as a kid the thought of CFS and that I could get that is very scary. As of right now i feel better than how I felt at the worst of my setback, but I don’t feel back on track and I just keep feeling ups and downs (and the same amount of energy as I had in March). and sometimes I feel like it’s just going to to downhill and not get better. i also want to play on the basketball team this coming year (it starts in October) but right now I’m not sure how long it will take to recover and I am always stressed about it. It helps to hear everyone’s stories though. 

Hi Young Boy,

Oh goodness you have been through such a rough six months by the sounds of it, thanks for taking the time to share your story and really empathising as someone who went through mono about 12 years ago.

I really want to encourage and reassure you that what you're going through is normal for the virus, it's so frustrating as recovery is often very zig-zag with it, you feel a little better one day or week and then have a terrible crash / setback. It really is awful, especially when you're an active person and like your sports and can't do the things you enjoy doing.

Please please let me reassure you regarding CFS - it took me 9-10 months really to see a major breakthrough in my recovery and thanks to God's help made a full recovery. It is very normal for things to go on this long and go on and make a full recovery - the vast majority of people who struggle for months and months with this worry about CFS, I know I did, but it is very normal to go through what you've been going through and then make a full recovery - I know it's hard when you read these scare stories on the internet. One thing that helped me is remembering that 90%+ of the western world has been infected with EBV (virus that causes mono), most as a child or baby when they don't really get the full whack of the symptoms, but 90%+ are fit and healthy and don't have CFS - and I truly believe you don't either. There is a difference which often isn't defined between post-viral and CFS, post-viral is what most people go through with mono, where their body takes many months to recover from such a hefty and nasty virus - but they do make a full recovery with time!! And you will too!!

Getting plenty of rest and not pushing yourself too much with sports and things is important too - frustrating I know, but do still do things you enjoy like seeing friends, going for walks, etc, that's really important too, just don't overdo things and rest when you need to. Taking a good strong multi-vitamin per day can be helpful too and getting even Vitamin C and B vitamins can also be really helpful.

The period you have gone through is BY FAR the worst - the first six months can be awful and you won't have to go through anything like that again I truly believe, that was my experience anyway. It's hard to be patient I know but remember you WILL make a FULL recovery, and don't panic if it still takes a little longer, that can be normal, but you definitely will get there! And being young is an advantage too younger people bounce back and get over this well even though it's so hard and tough to deal with at the time.

Thinking about you and absolutely believing you are going to get better - trusting God to pull you through, absolutey 100% believing in your recovery!

Craig

Hi Craig 

Thanks so much for the response and it was very encouraging, So far my setback has lasted about 3 weeks and it’s not really improving yet which worries me that I might just have to go through all this over again and all the progress I made was a waste. How long did it take you until you were fully able to be active and workout and stuff again? Also if I do anything that’s somewhat active (like jump up to grab something) then immediately I feel worse after. Anyways thanks for the help and it’s awesome that your still helping peoole who have mono out 12 years after you had it.

Young boy 

Hi Young Boy,

It's totally understandable that you feel the way you do having been going through this for so many months, it's so hard I know. Really do want to reassure you that setbacks can last this length of time too, in no way does it mean you're back to the start - it feels like that but it's not the case, your body is already way further forward in coming to grips with it 6 months down the line than at the beginning - even though it may feel exaclty the same - so please be reassure that things will get better. It took me a good 10 months to feel much more like myself again, but I was older than you when I had it and younger people can recover quicker (often but not in every case).

You have lots of healthy and happy times to look forward to when this is all over man, you really do!! So sorry you're going through this time right now and most definitely thinking about you and rooting for you.

Craig

Hi Craig 

Thanks so much for helping me out, mono really shook up my competitive edge and confidence, and I’ve always been very energetic and active and it’s hard to see myself everyday not being able to be active yet, So I’m glad you have responded to me and I bet all the other people have too. You show lots of empathy as someone who has went through it and even though you don’t have it anymore you still think about the people who have it right now and try to help them out which is an awesome thing to do and it shows what type of person you really are.

            Also I wanted to ask is it possible to only recover a certain amount and stop there instead of fully recovering and getting back to normal health? 

- Appreciative of your messages,

Young boy

Hi Young Boy,

Well it says more about you I think that you took the time to say those kind and lovely words to me even though you have been feeling so unwell yourself!! I only know how awful and horrible this virus affected me and really want to reassure you and anyone going through it that there is hope and recovery and it doesn't last forever!

I worried in the same way as you when after 6-7 months I felt only a little better as if that was as good as things were going to get, that my new best was not going to be anything like my old self and would have to get used to this new 'normal'. Let me reassure you that it is normal to feel like that right now, and that things do GET FULLY better, sometimes this phase feels like it can go on for so long staying at the same level for ages, but then with me and lots of other people there seems to be a sudden step forward in a short space of time. That happens for a lot of people, and for others it's more a gradual zig-zag but overall upwards recovery.

Sorry for rambling a bit, but in short, from my knowledge and experience of the virus, you are absolutely going to get back to FULL HEALTH and not just reach a certain level and plateau. I felt exactly the same as though this was happening, but then a few months down the line things had changed and improved a lot. So remember sometimes it's just a time factor, which I know doesn't help when already been going through it for 6 months - such a long time I know - but remember you are going to make a full recovery and have lots of happy and healthy times ahead!!

Thinking about you and remember get plenty of rest and it's only natural that your confidence would be affected by this - mines was too but it does come back as you start to get better, rest assured trusting God that will happen Young Boy! Hoping for a settled weekend / week ahead for you and praying for your full recovery.

Craig

Hi Craig 

Keeping the things that you have told me in my brain,  and thanks for being so encouraging as always. I know that you probably have to work and have more things than just replying to me on this forum hahah, so I’m thankful that you have been so empathetic, I’ll keep you updated but I’ll try not to bug you to much😂. Anyways thanks so much for the help and god bless you!

- Young boy

Do keep us update Young Boy for sure, oh not at all I have had to be off work at the moment and have lots of free time so coming onto the forums has been a good thing and a blessing for me too.

Yes do try to remember any words of encouragement and feed on them in tough times, it's not easy I know but I'm thinking about you and believing you're going to get through this and be back to full health again. May God bless you too! Thanks so much for the kind words!

Craig

Hi Craig, 

So far my setback has been about 3 weeks, and haven’t really seen improvements in it or any signs of starting to get back to where I was. I remember before I had my setback I was feeling as though it was improving, where I could go outside and shoot around (like shoot a basketball), without feeling worse (unless I do it for to long). But if I did any running or jogging at all I would immediately feel worse.

           But back to my setback, right now I feel about the same as I did like 3 months ago, and I don’t know when I will be back to where I was because i gained the symptoms that I had 3 months ago like forgetfulness, a bit of joint stiffness, and occasional headaches. (Which I didn’t have right before my setback because those symptoms had gone away). Also my endurance has gone way down where before I could walk for miles without feeling much worse but now if I walk around town just a little bit I will feel worse the next day. So I’m worried that it will take me another 3 months to get back to where I was because I feel significantly worse and no signs of improvement. How did setbacks/crashes go for you? Just wondering because this is my first setback so far as before it was just very gradual improvements monthly, with ups and downs as days go by but this time it was it slowly got worse for a bit and hasn’t gotten better. 

-Youngboy

Hi Young Boy,

Oh really understanding these worries you are having that you feel you have been set back and will take the same length of time to recover and get back to even the level of progress you felt you'd made. My experience is that the virus generally doesn't work like that, that recovery is very zig-zag, up and down and unexplained. So you could have a setback for a month or whatever and then suddenly move a big step forward again, and then it can go back and forth - but remember overall it's going to be like a graph which goes up and down but the overall trend you see is going up - and sometimes even with an upwards graph you get those low peaks, if that makes sense.

So really do want to reassure you that this kind of thing is normal, I just really hope that this episode passes soon and settles as I know you must be so weary. Remember just get extra rest during this time and don't eve think about strenuous exercise, if you can manage a short walk or whatever each day that is a great achievement, but just listen to your body and get plenty of rest before or after doing anything too if you can.

I know it's not easy, so frustrating, and it really makes you feel anxious and worry - please please be reassured that what you're going through IS normal and it IS normal to make a full recovery. I struggled like this with not much progress it felt like for many months, but took a big step forward in a short space of time after 9-10 months and that really was the start of full and proper recovery in my life. This breakthrough is coming for you too I truly believe that, don't panic if it still takes a bit of time to get fully better, or if the setback continues a little longer, it can happen but ABSOLUTELY this won't last forever and you WILL get back to full health and make a full recovery. I believe the next 6 months is going to be better than the last 6 months for you Young Boy, and next year again is going to be even better and a year of full health and happiness again.

Thinking about you and remember message any time - I can see such maturity and wisdom in your words for being so young - you have lots to look forward to once this is all over I truly believe that, and you WILL get there absolutely I believe that, no matter how far away it seems now, trusting God with that!!

Craig

Hi Young Boy,

I just want to second Craig's message that this is totally normal and you will get better I know it seems hard but I've found that when I had a setback I would feel better if I relaxed and thought positively. You can enjoy rest - you can catch up on that TV show you've been meaning to watch or enjoy noticing the nature in your garden that you never see when you're rushing about. Also, as Craig said, trusting God with your recovery can really help too. Mono/EBV can rob people of physical energy and can also make people feel really miserable, but even if you're too tired too do much exercise (short, gentle walks are great though) you can still begin to practice being hopeful. You sound so brave and you will come through this! 

Ste.orra

Hey Ste.orra, 

Thanks a lot, it really helps when other people with/ who have had mono tell me their experiences with it and try to encourage me. Are you back to full health yet? If you are, how long did it take you to be fully back? Thanks for the help,

-Youngboy

Definitely agreeing with Ste.orra's wonderful words of encouragement - what a lovely message!! Young boy you definitely will get there, you have been brave as Ste says, this won't last forever and God has an amazing plan for your life and He wants you fit and healthy for that - trust Him with your health, the hardest moments are those when we feel out of control and we just don't know what to do next - as Ste says if you can it's okay to relax in the knowledge that God is protecting you and won't let this thing beat you - even if it feels different right now, you are going to get better!!

I know these things are easier said than done when going through this, still thinking about you and rooting for you and absolutely just to reassure what you're going through is normal for this stage and I believe you still will get better - but of course do keep checking in with the docs and ask for blood tests, etc, regular and hopefully that can bring some ressurance too.

Craig

Hey guys,

Thanks so much for the encouragement, I really appreciate the help because as always I have my family with me, but it’s different when my mom says I will be ok, or when someone who has gone through what I’m going through and got healthy again says it. From what you know, what stage do you think I am in right now? Like is it toward the middle or toward the end? Also last time I got tests done everything came out good, and the doc said the EBV was now dormant, i was wondering if it’s possible for EBV to be reactivated since I got tested last? Anyways thanks for your guys help I really appreciate it. Obviously you guys didn’t deserve to contract EBV or to have to go through this because you guys are such caring people and help others. 

 -Young boy

Hi Young Boy,

I had a lot of blood tests done during the 9-10 months I was at my worst and they all showed back normal apart from the early one which showed EBV. This is normal (and encouraging) for the blood tests to show normal but still to be getting the symptoms for many months afterwards - but the symptoms do go away and do take it as reassuring that the blood tests are okay - it means that it almost certainly is the mono and nothing else causing this.

I'm glad you have a supportive family Young Boy, that means a lot - do talk to your mom or someone you trust if you can because anyone going through this really needs some reassurance and support - I know I needed it in abundance and still rely on reassurance from my mum at 36!! In terms of where you are at in the recovery process, I can only go on my own experience which was that after 6 months I was still feeling pretty yuck and fatigued like you, trying to do some things but feeling like I was fighting against the wind with it. My experience was that the first 6 months is by far the worst, and that what comes after that is much easier and moving towards full recovery, but again it just seems to take different times for different folks - but absolutely I believe you are going to get fully better and remember don't panic if it does still take more weeks or months, that can be normal but you WILL get there - it's so hard to keep positive when it goes on so long I know, but the first and early stages are by far the worst and hoping and praying the intensity starts to lessen from here on in for you! Thinking about you!

Craig

Hi Craig,

Thanks for the great words, and I wanted to ask you, about this setback of mine, when would it become something that I should really worry about, because I feel so much worse than how I had been before my setback. And it has been 4 weeks since my setback started and I don’t see improvement. And I don’t think I will get back on track any time soon. 

           I just am scared that it might just go backwards from here on instead of going forwards, and it will just get worse and worse. 

         I appreciate the kind words SO much, and they help a lot, but this setback is not improving and I am getting worried. 

-Young Boy

Hi Young Boy,

It's totally understandable you would feel anxious having a set back going on for 4 weeks, it must be awful and I really hope and pray things settle down really soon. I've learned from my own experience and from reading everyone's messages on this forum that there is no 'text book' with how this virus goes in terms of its ups and downs and setbacks.

Although I'm no expert I do think it can be normal for setbacks to last this period and longer for some, I had a few spells which lasted 1-2 months where things started going in a different and felt like backwards direction which was frightening and I really do understand.

Remember that overall although it feels like it sometimes you can never be in as bad a position as at the start, your body has 6 months behind it of getting to grips with the virus and that counts for a lot, even though you might feel the same way in this setback, your body is better equipped now and will come out of this down period I truly believe that. And remember for me and others recovery took a few months longer than the 6 month stage, so hang in there I know it's hard to be patient and just take extra rest and recuperation right now, don't set any timescales to get well or back on track, just focus on each day as it comes and coping as best as you can - getting through each day is an achievement at this time for sure. You're doing well to hang in there Young Boy I can really see courage in how you've been handling this and you should be pleased with yourself and take confidence in that, because it's so hard to deal with.

Thinking about you and trusting God is working in the background right now and you will see the manifestations of His healing hand over the coming period. And another thing to remember each setback although horrible to go through actually I think is your body getting on top of another area of the virus, so that you feel stronger than you did before the setback when you come out of it - so it's actually your body recovering when not feeling great in a strange kind of way. Of course don't hesitate to go back to the doctor and tell them how you are feeling and about the setback, I hope they could offer some help and maybe a blood test and be able to offer some reassurance.

It's not easy not to worry I know, but definitely be assured that things DO get better from this and I'm praying for your full and complete recovery.

Craig

Hi Craig,

I just saw my doctor today and he said that in April when I did blood tests, my EBV numbers were there, and had gone a bit up. He sent me to get more blood tests done so I am going to try to get those done soon. 

Also he told me that he is going to send me to a Chronic Fatigue specialist, which worries me a lot because does that mean I have CFS? I am very worried that I do, and it makes it worse considering that this setback is making me feel even worse. 

            I am also very worried that my EBV numbers/levels will be higher and worse. I am also worried that it is not going to improve and get back to full health again. 

           Last time I did blood tests, the lady said that the results said that the EBV was dormant, but now my doctor says that I still have active EBV, so that makes me confused. Also on the blood test paper for diagnosis, it said “Chronic Fatigue” which worries me a lot that I have CFS. 

             I really do appreciate all the encouragement  that u guys have been giving me, but it’s just really hard going through this all. With this worry of CFS, the worry of my EBV levels, the worry of this setback, and the worry of the other stuff that is in the blood tests. 

-Youngboy

Hi Young Boy,

Goodness you've been through such a tough time, it's so hard when it keeps going like this I just really hope and pray things improve and settle down soon. I really want to reassure and encourage you regarding CFS, I am no doctor or anything but in my opinion and from reading so many people's stories and experiences of mono, doctors are wrong to say after 6 months to someone that this is CFS - because I took a good bit longer than that to recover and have read stories of others on here that took a year and got back to full health. My view is that there is a real difference between post-viral and CFS - post-viral is what most people go through with mono, and what you are most likely going through now Mono, which means your body takes an extended period to recover from the virus but then makes a full recovery. I can truly understand how worrying and alarming that is when a doctor mentions CFS, but remember you will still make a full recovery and I truly believe IN NO WAY will this be chronic or that you won't recover - I definitely believe knowing what I know about the virus and how it operates and how long it can last that you WILL FULLY RECOVERY. And it's okay still to go and see CFS specialist, that doesn't mean to say you have CFS and hopefully they will have a better understanding of mono than a general doctor and understand that it can take a longer period to recover.

Hoping that the new blood tests you get done show that the EBV levels have settled, having those levels rise in the last blood test is probably an explanation for why you've had this setback at present, but remembber it is only a setback and things return to normal. There was a period actually into the second year where my EBV levels were raised again in a blood test, for the first time since the very start of me having mono, it worried me so much thinking I would have to go through all that again - but things settled down in a few weeks after that, you can only be infected once with EBV and if it reactivates your body can deal with it much better and this can be normal and then return back to normal again.

Really hoping things pick up soon, so sorry that you've had these setbacks it's so hard to keep positive when that happens I know - I do trust God Young Boy and believe that He is looking after you and going to make you fully better again, it's just a hard time right now and in no way are you going to be stuck with CFS or anything like that I believe God wants you to know, even if it takes a bit of time for full recovery that can be normal but you will recover I truly believe that and pray to God for your recovery Young Boy.

Thinking about you and remember be kind to yourself, this has been tough to deal with and do what you can to distract yourself from thinking about it all the time, it's so hard I know when feeling the symptoms - you ARE going to get there, you're young and have lots of healthy and happy times ahead and to look forward to, I really do believe that. Thinking about you and message any time, let us know how you get on with the new blood tests hope you can get them done soon.

Craig

P.S. Taking a B complex tablet alongside a good strong multi-vitamin and extra Vitamin C can help with the energy levels

Hey Craig, 

I’m so so so thankful that you have been responding to me so frequently and so quickly! It really means a lot and I really appreciate the assurance you give me. You help every single one of us still struggling with mono, and you take time out of your day to talk to random people and encourage them, and it’s people you don’t even know but you still show such empathy to them. The world needs many more people like you, I really believe that and wish that everybody cares for everybody just as much as you care for people. And I really wanted to let you know that.

          My doctor had told me about some kids who’s mono went on and on for year/years until the fatigue went away. And I am very worried that mine is going to just go on and on for a year or multiple years and just not improve and get me back to normal health again. I’m really worried that mine is one of those cases where it will just keep going on for multiple years. 

           And with my setback I am worried about it and that it won’t be back on track, as I haven’t been seeing any improvement. And I haven’t seen any signs of getting back on track. I feel like this setback is just going to go on and on, and ruin all the progress I had made before. 

           Also I have been getting anxiety, and can not think positively at all. Usually I would be a very positive kid, but now the thought that this is just going to go on and on for a year or multiple years just won’t get out of my head. 

           Oh yeah and to let you know, I have been trying to take vitamins, and have been eating good food and stuff. Recently started taking some herb powder stuff that is meant to help immune system.  (Thank you for the tips tho, is really means a lot). Also I wanted to ask you from your experience, if you did anything too strenuous, or a bit to much for your energy level, would you feel immediately worse? Because for me, if I do a harsh movement or jump up to grab something, right now I would immediately feel worse and would start overall feeling worse. That worried me too because my doctor used to say that strenuous activity wouldn’t make it worse for me, (complete lie by the way😂. Also I was wonderomg, if u don’t mind answering, Are you from the UK, or out of the US? Because usually you reply when it’s the middle of the night for me😂. Anyways I really appreciate you taking your time to respond and help me out, it means so much and I apologize for rambling so much, but the mental part of this is very difficult too, and it really helps talking to people who have had mono about it. Thank you so much, and I really appreciate the amazing words to encourage me with, but it’s hard to hold on to all of them and think positively. 

  -Youngboy

Hi Young Boy,

Thanks soo much for the kind and sincere words you speak, it really says so much about you and I can tell that you are a good, kind, intelligent and courageous young man. At the moment because I've not been at work because of my own issues I've just had a bit more time so it's been easy for me to come onto the forums, it helps me too and is good for me.

I know that at your age if I had mono I would be in bits as it's not an easy time being a teenager and that transition from your childhood years into being an adult. You're doing well in how you're coping even if it doesn't feel that way Young Boy, I can really see that and please do take confidence from that. 

I'm so surprised at some of the stuff your doctor has been telling you, and it's totally understandable that what he's been saying would make you feel worried and anxious. Really truly for the vast vast majority of people, mono doesn't go on for years and years, it really doesn't. It IS normal for this kind of course you are going through within the first year though, what worried me at first was the doctor said to me and many websites you read say recovery from mono is 4-6 weeks or 6-8 weeks, and most people on this forum would laugh when reading that because the reality is it can be much longer unfortunately. But that doesn't mean to say that it lasts forever, it does eventually resolve and I know it's easy to doubt and and so hard to feel and think positive when it goes on so long - just hang on in there at this time, it's not easy I know but remember God is in control and He is going to get better. Of the very very small percentage who do have problems for a longer period, it is often contributed to by other health issues and they are usually much older than you! You are young and your body has lots of fight and courage in it and will get on top of this thing eventually, truly I believe that!!

I really hope this setback you've been having settles down soon, remember still after about 6 months you're still going that that period where it is very up and down and some of the down spells can last for longer than we want, but they do get better - try not to put a timescale on it and just take each day as it comes, and remember the progress you've made won't be ruined at all because every setback like this means something's happening in your body - i.e. your immune system is kicking into action to get on top of this and when the setback is past you will be stronger than you were before you went into it.

Yes I found when I had the virus that doing strenuous activity was a real no-no. That seems very odd of your doctor to say that you should have no problem doing such activity when this virus makes you feel so unwell and fatigued. Lighter and gentler things, even like getting out for a short walk each day if you feel able to that is, are much more advisable, because overdoing things or doing things for a long period can really bring on the fatigue and sometimes you can feel it right away and sometimes it's not until later on or in the few days afterwards it really hits you. That doesn't mean to say you can't do anything, just listen to your body, don't overdo things, and give yourself plenty of rest before and after! But still do things you enjoy like seeing friends, watching tv, reading, listening to music, walking, things that you enjoy that help destress and take your mind off it without exerting you too much either - it's good for the mental side to do that.

I really do understand when you say you want to think and feel positive but just can't. I have been the same lately with my situation, normally I am a happy and positive person but the issues i have been going through have really drained me and it's so hard when you feel that way. That's why it's important to talk to others and keep good people around you and don't keep it all to yourself, hopefully there can be family / friends around you that are understanding and helping, talk to them and confide in those that you trust and let them know how you've been feeling.

Oh I'm in the UK Young Boy, in Scotland to be precise. Yes I gather that there is a mixture of people from the UK and USA on the forum, but also seen folks from lots of other countries too!

Sorry for such a long message and remember you ARE going to get better - I absolutely have full confidence in that and even if you're struggling to see or believe it yourself right now, remember that others are believing that for you and asking God to help you!

Craig

 

Hey Craig!

        Thank you so much for the kid words, the encouragement, and the tips/help you have been giving me, and countless others. I really do appreciate sooo much. And I am really sorry that you have been experiencing your own issues right now and haven’t been able to go to work. I’m not to sure about the specifics, whether it is family matters, health issues, or etc. But I do believe that you will pass through this, and remember to stay strong! I understand that you are worried, as I’m in the same boat, but just as you told me, if there is anything that can take your mind off of it, do that. And remember that it won’t last forever, and you will improve! Remember that god is always with you, as you are so kind, and helping and you care for others so much. God will help you pass through this, and he will guide you. You will be able to overcome this, it’s just another step in the road. 

         I really do hope your issue passes through and improves soon, as it must suck to not be able to go to work. 

         I have too been really worried, about my setback, and that it won’t pass through or improve soon, and I am really worried that my blood test results aren’t going to come back good, and that there is going to be another problem with me. About my setback, It has been about 6 weeks since I first experienced it so far, and it has not been improving, and by the looks of it, it isn’t going to start improving anytime soon. I am really worried that this has reset my progress, as I don’t see myself where I was in May, but I see myself back to where I was when I originally felt like this, because of how I’m feeling now. Whenever I wake up in the morning I already know that I’m not going to be back on track and I know that I’m going to feel the same as I am now. Before this setback, I was starting to feel another step forward, and was thinking that I was going to get better and that in a small amount of time I would be back, but now I am really worried that it is the opposite, and that it will not pass through soon and that it will just go on and on. 

         I am also still really really worried that my mono and fatigue and stuff will just go on and on for years, and I will not get back to full health. 

           This is just a really tough time right now, and I am really worried that it will just get tougher, and not get better and improve. 

             I am thankful for the great words you have been giving me though, and I am thinking about you, and hoping that your issue resolves soon. 

- Youngboy

Hi Young Boy, Thanks so much for your kind words, they were lovely and I really appreciate them. My issues have been mainly to do with my back and a few other associated health issues plus how it's affected me mentally, so I do understand about tough times as I know you do too.

It is totally understandable you feel the way you do, worried and anxious. At times with this virus there isn't much else you can do but just try and hang on, stay in the present, even when the day's are hard just remember it won't always be like this and this is a temporary phase in your life. I know it doesn't feel like that at the time, it's so hard but I really do believe you are going to get better I truly do! And thanks for telling me that you feel I will get better too it means a lot for me to hear that right now also!

Just take things one day at a time, celebrate any small goals or achievements in a day, and that just includes getting up and getting through the day when things are hard. Getting through every day is an achievement with this virus that's for sure, and again from my experience of the virus everything you have been going through is normal and simiilar to the way it went for me up until 6 months and then things did get better after that, and I do believe that will be the case for you too!

Craig

Hey Craig,

I really am thinking about you and your back, and other issues, but it must be very terrible to not be able to work because of it. I do believe that you will improve, and remember to always have faith, and trust god.

           So at the beginning of me starting to feel this setback, it sort of built up, as one day I felt a bit worse than how I had been, the next day got a bit more worse, and then the next day was a bit worse and just got even worse as the day went on and just got much worse. And hasn’t felt better since. 

         But today, at first it seemed like a good day, but out of no where my fingers started to feel pain, and then my one part of my foot and i overall just feel even more worse than I already had been, and I am really really worried that this is the start of Chronic Fatigue Syndrome. And  I am really worried that more symptoms will appear, and these symptoms will just get worse and worse and not get better. 

         But I have the same feeling as I did with the beginning of the setback, where I feel like it’s slowly getting worse, and I feel that right now and I am also really worried that it will be another setback where I will slowly just get even worse that this past setback that I’m going through. I really am worried that this is really abnormal and that something is wrong and that it will get worse, and not better from here. 

             Before this I haven’t really experienced pain in fingers or my feet or anything which I found very unusual as it’s a new symptom. 

           I apologize from blabbing about this, but it’s just a very difficult time and I am really really worried that something is wrong and it is going to get worse and worse, and not get better. This setback has been just going on and on and I’m worried that it will just keep on going on and on and just get worse and the time goes on and that I will get CFS or something. 

         I really really am sorry for rambling tho, but I just wanted to ask you about it as it has me really worried and I’m not sure what’s going on. My best wishes for your back and other health issues, and I think the mental health issues happen too with physical issues as i have really bad anxiety and stress and depression with this too, and it is very tough to look on he bright side I know, I truly know how tough it is and I too can’t think on the bright side with this, but just trust in god and do your best to improve your back and other stuff and as it improves your mental health will improve too. Thinking about you and hoping you improve Craig!

-Youngboy

Hey Young Boy,

Please don't apologise as you have absolutely nothing to be sorry for! And you haven't been rambling either, it is fully understandable to feel so worried and concerned given the horrible symptoms and situation you have been going through, I really hoping things settle soon and a turning point is on its way, I really do hope and pray that and I do believe it will happen for you Young Boy and that God will heal you, truly truly I believe that so (hard as it is I know) try not to worry and remember He has control of this situation and is looking after you and won't let any long term harm come to you.

That's awful you're having these pains in your fingers and feet, it reminds me of a phase of the virus I went through after about 8-9 months when I started to get terrible joint pain, for me it was in my knees and arms and started to get some bits of bruising with it too. I couldn't understand what was going on and was just felt at the end of my ability to cope at that time, probably just as you have been feeling now. But looking back I believe that phase was actually the start of full recovery for me, because a few weeks later I really started to feel much better and full recovery started from there. At the time I was so worried and I remember reading that this virus can cause something a bit like a temporary reactive arthritis which makes your joints and things sore, but in no way does that mean anything permanent and just another phase that can happen with some people with the virus. And this actually might be a final push too before your body starts to fully recovery Young Boy, I really hope and pray that.

I was exactly the same in that I worried about CFS too, I think everybody who goes through what we have with this virus does, it's very common and totally understandable. But truly I don't believe you have CFS Young Boy, and that this will get better - when something goes on so many months it's understandable you start to question why it's not getting better and feels worse even at times with new and unexplained symptoms - but this is classical typical presentation of this virus, it hits you in different ways at different times and persists, but eventually your body does get on top of it and the doctors who try to say after 6 or 9 months or whatever that you have CFS, I disagree with because for a lot of people (including me) it took this time and longer to recover.

You've had such a rough time with this I really hope and pray things get better - it's hard to keep your spirits up and think positive when things not going well, keep hanging in there and ask God to help. He won't let you down believe me, you ARE going to get better and remember try and talk to someone around you that you trust about how you're feeling, it helps to share this and hoping God can send the right person to give the right advice and support to you, whether it be a family member or someone else, I believe He will.

Thank you for such kind and helpful words for my situation too, it means a lot and yes I will try to take your advice and keep trusting God and having faith. I've had a tough few days too and also trying to break the barriers of pain and fear. Praying God helps us both with this. Sometimes our faith can be tested in these trials, but it's important we hang tightly to it and remember God is a good God and is protecting us and He knows why we have to go through things when we don't understand and is the master as turning seemingly hopeless situations into amazingly positive and happy ones, really praying for this in your life Young Boy, you are young and I truly believe God has an amazing plan for your life and needs you well to do that - so just take things slowly and don't look far ahead for now, coping with each day and these symptoms is more than enough, and remember absolutley you will get there and make a full recovery, even if it takes a bit more time still, I feel confident thanks to God that this will happen for you.

Thinking about you today and in the hardest moments, stop and tell yourself 'although I might not be feeling great or at my best today, this is a temporary situation and will pass over and I will get back to full health thanks to God's help'

Hang in there you ARE GOING TO GET BETTER, that is the message I believe God wants you to know today.

Craig

Hi Craig,

Thanks so much for the response, truly appreciate it so much. After people recover they stop trying to help us who are still going through it, and it says a lot about you to be on here everyday and helping people with this.

          I’m not excactly sure what your back pain is caused by, but recently a college basketball player had to sit out of the season with a herniated disc, which he had to get surgery on. But he is making a comeback and he will play professionally this coming year. He has been out for over a year now and is still recovering, and has done procedures to help his back and all of that. But he is coming back and his back is healing. So I truly believe that you will come through your back pain too, and it will get better. 

            So recently I have been feeling as it is getting worse over the days, and I feel like I will either have another setback, or it will just keep getting worse until I am in bed rest and it will be chronic fatigue syndrome. I know how many times you have told me that it will take a long time and that setbacks are normal, but the way I’m feeling makes me feel like it is just going to slowly get worse and worse, and not better. 

           With what you know about the virus, do you think that could happen to me now, where it just slowly gets worse instead of getting better? Because I have been feeling that way, and it does feel like that is what is going to happen. 

          Also this may sound silly, but this has been messing with my head a lot, as i get paranoid and anxious by the feelings I have, where if my body feels a certain way, I get a feeling in my head that tells me whether it is just a minor down throughout the day, or if it is a setback (like I have now), not to sure about it but it’s like I try to predict the future by what feeling I get in my head😂. And if it is the wrong feeling that is a bad sign, I get even more anxious, stressed, and paranoid. It’s like my body knows what it going to happen, and my Brain is trying to figure out what my body is saying before it happens (if that makes any sense). Just wondering if that has happened to you, or anything similar as with how I am feeling now, I am getting the thought is that my body is telling me ahead of time that it is going to go even more downhill and get worse, instead of getting better.

         Again sorry for rambling, but also I really want to thank you as your messages have been the most helpful part of the mental/emotional side of this illness. Hoping and praying for the pain to ease in your back! 

-Youngboy

Hi Young Boy,

Thanks for the encouraging words regarding my back it means a lot it really does! I have a disc bulge my scans have showed but just grateful to God it hasn't been worse and still been able to manage to move well and get out and walk and things - grateful for that and holding onto your words that things will get bettter, needing to hear that right now!!!

Oh goodness please don't apologise there is nothing at all to be sorry for and you haven't been rambling at all - your message makes perfect sense and is well put and I totally see a lot of myself in how you describe you have been feeling I really do!! Also thank you so much for saying such kind words to me, it says more about you taking the time to do that when going through such a hard time yourself with this - it's easy for someone when well or not suffering with that to come on a forum and try to help but so much harder to do when feeling unwell. You are a blessing to the forum here Young Boy and I truly believe God sees how brave and kind you have been and is very pleased with you for that and how you've been handling this very very tough situation.

These fears and worries you have been having are awful Young Boy, I really really relate to what you say about how it gets into your mind and you want to feel and think positive but when you feel so unwell and like it's getting worse at times instead of better it feels virtually impossible to see light at the end of the tunnel. I do really understand, I have been having almost exactly the same issues lately with how fears and worries and pains have been getting into my head and making me feel paranoid and worse and tied up. And it's not just something you can switch off either it's just how you feel - as you say it's okay for someone to keep telling you that things will be okay but when you don't see the progress or feel like things are going well it's only natural to feel discouraged and for things to make you feel the way you've been feeling. Really empathising and hoping things feel much better soon, hang on in there Young Boy this won't be forever.

From what I know about the virus, and again it's just my own personal experience and reading the stories of others rather than any medical knowhow, it is very common for the virus to do this to you and cause these kind of fears, worries and anxiety. I felt that way too at times worried things would get worse and worse and it's a horrible sinking and spiralling feeling, let me reassure you Young Boy I truly don't believe that will happen from what I know about the virus, it feels so severe when going through these horrible lapses but they do pass and things do go up and down until things settle and full recovery comes - most definitely I truly believe you are 100% going to get better because I went through a very similar phase as you are going through now, unsure if I was going to fall off the edge of a cliff with this or if I had any future at all, but remember God is watching and He is working and I truly believe He is going to heal you and make you fully better - not just a little better but fully better. And if it still takes a bit of time, don't panic, that can be normal. Although I didn't realise it at the time, 6 months into the virus is still really the acute phase and that's what you're going through - these are by far the worse 6 months and you won't have to go through anything as intense as that again, even though it still feels terrible now a turning point does eventually come and it will be a marvellous day!! I know for sure it's not easy to hold onto hope when in such trials, thinking about you and really hoping and praying this difficult spell passes over quickly and for new hope and healing in Jesus' name.

Now it's me that has been the one rambling!! I'm going to send you a short private message as well if you check the inbox bit. Still rooting for you and believing things are going to get better for you, truly genuinely and sincerely I believe that - hold on for now though.

Craig

 

Hi Kiki , I would love to know how your doing now ! I got sick with  EBV about the same time as you. I’m still not back to normal but getting better.  

Hi David,

So sorry to hear that you have been unwell with mono, empathising having gone through a really tough time with it many years ago. I just want to reassure you that this does get better. I remember after about 6 or 7 months feel so weary and discouraged, because I had been going through the intense symptoms of this virus daily for all that time and only seeing minimal progress - I thought I would have to adapt to a new, lesser way of life. But after about 9-10 months I started to see a real change and breakthrough, and God brought help and healing. 

I just want you to know that things do continue to get better until you reach full recovery, sometimes it can seem like the virus gets 'stuck' at the same level for months and months, and then all of a sudden a big step forward and improvement can happen in a short space of time. I don't know why but that seems to be a fairly common course for the virus with many people. And by far the first 6 months or so were the worst in terms of intensity and severity, and God willing you won't have to go through anything like that again.

Taking vitamins and herbs definitely helped me, a good strong multi-vitamin per day, a B complex vitamin per day, Vitamin C in higher doses (1000mg-3000mg per day) and immune boosting herbs like oregano, siberian ginseng and echinicea.

Just continue to take things slowly and not put any pressure on yourself, and remember that with time you will make a full recovery from this and be back to good health again - I truly believe that thanks to God. Hang in there and thinking of you!

Craig

Thanks Craig , 

Like you said it’s so hard to keep positive with this horrible virus. The up and down roller coaster is horrible. I’m at the point now where I have a few weeks of feeling like a man again then I hit a set back. I never had a sore throat or swallow glands. My symptoms have been , really dizzy , tired no energy, up set stomach, anxiety, depression and I sleep like crap. I was a hard worker and very active guy before all this. Now I can’t really do much but take a few napes a day and rest. I had never heard about Epstein Barr virus until the doctor did a blood test in March of 2018. I feel like my life has been stolen from me. The hardest part of all this for me has been everyone says you look good and don’t look sick are you sure it’s not in your head. I hear that a lot from my wife. So reading that other have gone through this make me feel so much better. Thanks again for your reply. 

Hi David,

Thank you for thinking of me.....I feel like the odd person out here on this forum as I have been hit with EBV/CMV, Dengue Fever and mycotoxic (toxic mould) poisoning all within the span of 3 months. Most of my symptoms have been neurological (unceasing headache, blurred vision, tingling, burning sensations on the tongue and skin, white tongue, weakness in the limbs, mild tremor on left hand.....). Without a doubt or hesitation the last 6 months have been the worst of my entire life - I really thought I would die when I was in Jamaica, where I was working (I believe I had come down with Dengue Fever at that point).

I have seen so many specialists including a naturopath who has given me a protocol with binders (bentonite clay, chlorella, charcoal) for the toxic mould and soon I will start Nystatin which is an anti-fungal. She works with a doctor in the U.S. who sees many of patients with toxicity and says that the toxic body suppresses the immune system and therefore needs to be treated in order for one's innate immunity to really kick in and take care of viruses.....I feel like I am down the rabbit hole. Unlike you, I don't feel that I have any good days, just bad days and worse days. Through my naturopath I was referred to a kinesiologist who does an interesting therapy. There are not many practitioners who use it but I think there is some interesting science behind it. It is called Frequency Specific Micro current (FSM). I am in Toronto and there is only one place that does it. There is a good description on the Cleveland Clinic website. My kinesiologist has used the treatment on fractures, viruses, fibromyalgia, mycotoxins...I have had 2 treatments and feel like it is calming my central nervous system somewhat....I am giving it a go - I have nothing to lose!

I really relate to the insomnia you say is one of your main symptoms. We NEED sleep to fix our tired brains and bodies. As you can imagine I can also relate to the notion that our lives have been stolen from us. In my case there is no clear path to healing as I am not sure what symptom is from what....but something tells me it's mostly the EBV playing havoc on my temple. I am sure you will get through this.....it is SO NOT IN YOUR HEAD!....Stay strong and believe that you will overcome. Take this opportunity yo learn about your body and how to nurture it. Eat well, TRY sleep and TRY to meditate.......Thank you again for checking in with me. This is a lonely road to travel. Take good care.    

Kiki 

Hi Craig,

Just checking in with you...letting you know I am still alive! For the full update - see my reply to David. I am going into month 7 and am still struggling with debilitating neurological symptoms. I saw an MS specialist who has ruled out MS so I am grateful for that but still feeling like complete crap. As I was saying to David, I am not sure what symptoms are from what but just can't imagine living like this if this is my new normal. I couldn't be doing anything more than what I am doing - it is so frustrating feeling like nothing is working. I do hope I get through this awful period in my life. How are you? How is your back? Because I suffer from osteoarthritis in my neck and have a couple disk issues in my thoracic spine, I can really empathize with your struggle. I have always been active and have done yoga for 25 years, so was taking great care to not further aggravate my condition. The back is so tricky - it's sometimes hard to know if you are helping or hurting. I hope you are seeing some light. 

Thank you for all of your encouragement. Being so ill is a lonely place. You have been such a support to many in the hours of darkness that we are experiencing. 

Take good care,

Kiki

Hi David,

I can really relate to all the things you are saying, it sounds very similar to my experience of the virus and so many others I've read on here too. I was a very active and fit guy before I took the virus, but during the time I had the virus I had to step back completely from everything strenuous or stressful - work, exercise, late nights, early mornings - I was the same as you felt like my lifestyle was being taken away and it was so frustrating and worrying and stressful. But after some time I did get back to full health again thanks to God, I want you to know there is hope and there is recovery after this thing - so even though it's been going on some months, be reassured that this is normal (not that it makes it any easier to cope with) and that your body resilience and strength and help does remarkably return with time - I know it doesn't feel like that will happen when it goes on and on with little or no improvement - this sounds like you are in the worst phase right now, when you have come so far but still struggling to see any real breakthrough. Believe me David that major breakthrough and turning point will come, I truly believe that having been through all the same kind of emotional and physical and mental woes that this virus brings. And you're so right it's so hard when people see you and because you look normal can still go out or whatever, they don't really see how badly this virus can make someone feel or how it can affect them. I know most of the people on the forum do understand though and that's why it's a good place to come and hopefully encourage each other through everyone's recovery. 

It is very hard to keep positive I know, definitely hoping things settled soon and I truly believe you are going to get better - hang in there and just focus on each day now and don't look too far ahead is all you can do with this thing - and trust that God is working and going to pull through - I really believe that. Hang in there and thinking about you, praying for that breakthrough and turning point in your circumstances David, in Jesus' name.

Craig

 

Hi Kiki,

It is really good to hear from you, and thank you so much for your kind words and words of encouragement - you have been an amazing support to me and others on the site, despite going through such a horrible time yourself, and I really do appreciate it. 

It must be so frustrating that things are moving at such a slow place in recovery. I know you have been dealing with so many things right now, I hope that the other virus that you had is more under control and to be hit with such a terrible double whammy is awful it really is. I'm still thinking about you Kiki and still believing in your recovery. I definitely remember going through a phase around the same period into the virus you are now where I thought this was going to be my new normal, that my body could only recover to a minimal level and was somehow going to have to cope with this always - but please be assured that this wasn't that case Kiki and won't be the case for you either - this virus is classic for sticking at the same level with little or no improvement for months upon months, and then all of a sudden like a light switch a big step forward can be made in a short space of time. Your body resilience and strength does return with time Kiki, I remember thinking that seemed so far off when I was going through it, but God is going to get you through this Kiki I truly believe that, and that this horrible time is going to be put behind you once and for all and your health, happiness and freedom will return. Being ill is such a lonely place as you say, noone can understand the deep lows that people go through or experience that are personal to them, I know I have experienced some real lows too and wouldn't wish it on my worst enemy. Just hoping and praying for God's intervention and hand in your recovery today Kiki. 

Thanks for your concern for my back too, it means a lot it really does. I have been dealing with that and prostatitis for some time, trying different therapies and supplements and things. God has been helping me though, looking after me even in the hardest times, very grateful for that. I went to see a food testing specialist yesterday on SCIO biofeedback machine, I can't remember if you was you that said you went to something similar? It was interesting anyway and gave me some advice on foods (acidic mainly) that were not doing too well for me. Bowen Therapy another good one too. 

Keep in touch Kiki and remember you ARE going to get better, and the level you are at now WILL improve. I strongly believe that for you Kiki - hang in there and thinking about you, and message any time!

Craig

This sounds exactly like my story. I got mono in November but wasn't diagnosed until January because the doctors wouldn't test me for mono, From January through July I was slowly getting better but I was hit with a relapse at the end of July and I am still dealing with it 4 weeks later. This is the worst thing I have ever gone through and people that haven't gone through it can comprehend what it's like. Thank God my work has been understanding and made big adjustments for me to work at home. Since modern medicine has no way to help with this you have to take supplements, rest and pray to God to heal and cure you. 

Don , What are your symtoms ? For me it’s the fatigue, brain fog , dizziness, and feeling wobbly. 

I have the exact same symptoms. I am also nauseous in the mornings but after lunch I perk up a little.  

Well Kiki , I will pray for you. I hope you get better soon. Please keep me updated on how your doing. I know for me this has been the worst 6 to 8 months of my life. But for me it is slowly getting a little better. It just drags on and on for so long you start thinking maybe their is something else wrong. 

Take care 

Dave 

Don , Keep me posted on your recovery. Hope you get better soon. 

Take care ,

Dave 

Craig , 

I want to say thank you for the words of encouragement and spending the time to reply to me. I felt alone with this horrible virus until I found and started reading these posts. It has already helped me so so much mentally. I hope all is well with you. Thanks again. 

Dave 

Thank you Craig...I really appreciate your supportive words. I will keep you updated on how things are going. I am seeing an immunologist tomorrow - an appointment I have been waiting for for a long time. Let's see what he has to say!

Kiki

Thank you Dave. I know what you mean about things dragging on.....I have just ordered an "earthing" sheet. I am encouraging everyone I know to look up the website by that name. The connection to the earth and its negative ions is good for us to heal. The pad that I have ordered goes on your bed and is either plugged into a grounded outlet or if you are on main level there is a lead that goes out the window with a rod that is connected to the earth - sounds flakey, I know but there is a lot of science behind it....tomorrow is another day closer to being healed from this horrid virus! Take care. 

Kiki

Thanks so much for the kind words David, I really appreciate it. Having a hard time with things myself lately so I know how hard it is to suffer and struggling. Just praying for God's help for us all here on the forum. Thinking about you and still believing in your recovery.

Craig

Thanks Kiki,

Good luck with your appointment today, I really hope it goes well and can offer some hope, good advice, reassurance and encouragement - thinking about you!

Craig

Thinking about you Don, most definitely hoping and praying for God's help in your situation - praying for His healing touch, He can overcome all our problems for us, and grateful that He never gives up on us.

Craig

Craig , I have a question for you. When you say 9 to 10 months do you mean from when you got your first symptom or when the virus peaked ? For me I started feeling off and not right in January of 18 and it slowly got worse by March and at the end of March I knew something was wrong and got blood work done and came back positive for Epstein Barr virus. By April it’s peaked and was by far the worst month for me. It has been a roller coaster from them until now. But slow getting and little better each month.  July I was feeling pretty good and resumed back to a somewhat normal life but still feeling off. Around the first of August I starting getting really sick again, like it was starting all over. This go around it was not as bad as April but still bad enough to not work most of this month and take it easy. Thanks god I have a job that let me do that or I don’t know what I would have done. Starting yesterday 8/28/18 I started to feel way better and today was even better than yesterday. I’m hoping this was my last bad relapse so I can get my life back and move on. So for me it’s been 8 darn months of fighting this horrible virus. But only 5 months since it peaked. Thank you Craig for all the help and support you have given everyone here. Very much appreciated. 

Talk soon Dave 

Hey David,

Really hoping too that this is you coming out of this relapse and starting to move towards full recovery. I started to feel the symptoms of the virus in the October, had many ups and mainly downs it seemed through the next 6-9 months, had quite a bad relapse which lasted a few weeks in the following July, and it was August I remember that something really started to change, and it was as if the virus had started to lift and things became more bearable again - don't get me wrong I still did have to take things slowly for a while and took me a while to get working full time again, but I was able to live freely again after that and was so grateful God helped me and helped me bit by bit to get back on track.

I'm still believing that you are going to see that recovery David, even if it still takes a little while, don't panic because it can be normal - I have definitely seen lots of stories of people who have started to see and feel recovery between the 9 and 15 month stage, so really hoping that can be a period of recovery and restoration in your life, really hoping and praying for that David. Hang in there and thinking about you still.

Thanks as always for the kind words too David, I appreciate them and all the people on the forum have been so kind to me particularly with some of the issues I have been experiencing in the last year or so too, I have felt so much warmth and strength and been so grateful for everyone's prayers. Keeping you in my thoughts and prayers. 

Craig

How are you feeling now youngboy? Hope things have improved.

Hi Kay

I wish I could say that things improved. But I’ve just been consistently getting worse and worse. I have just been hitting new lows and haven’t had any improvement. I’m so worried that I’m stuck with CFS. 

Now I’m 7.5 months in, months 1-3 I improved well and felt 70% healthy but then I crashed and just have been getting worse and worse since. 

youngboy I am so sorry to hear this. I definitely know the feeling. If nothing else, the one thing I have learned from this horrible illness is patience. I am 13.5 months in and at 7.5 months I felt exactly the same you felt if not worse. Things will definitely improve. Please try and stay positive and get as much rest as possible. i still have bad days myself but they are definitely more good or ok ones than bad one now. 

Still thinking about you Young Boy, absolutely I encourage everyone on the forum here to say a prayer for you as I know things have been so intense and hard for you right now. 

Try to keep in mind that what's happening now can be (unfortunately) normal for how mono goes, and that it doesn't mean CFS or anything like that it just means your body is going through this horrible and wearying process of the battering that it takes from such a nasty nasty virus, but that with more time it does get better - as we all know everyone's timescales for recovery is different, but from my own experience and reading countless amazing recovery stories, I would say that a very common period for a major change to happen and recovery to fully start to engage is between 9 and 15 months - of course very much hoping it doesn't go on as long as that but just want to reassure and encourage you that often marvellous recovery can happen during that time, I'm hoping that something happens soon and before then but just keep in mind what's going on can be very normal and recovery thereafter is also very normal, even though it has frustratingly taken such a time to come - but it absolutely will come Young Boy, hang in there and remember things ARE going to change. 

Craig

I felt like I was managing it too a few months ago nothing great but was able to at least socialize a bit in the evening and then 2 weeks ago I crashed again after having a bit of outside trauma in my life . 

I’ve now completely eliminated dairy out of my diet and boosted immune system even more . My diagnoses was only 2 weeks ago also so I never knew what was wrong .

Let’s hope it gets worse then gets better . One thing I’m noticing by reading all these posts are although it takes a long time people do recover it’s just a b***h to get rid of.  I was run over by a car and this has been far worse ! At least I knew then I would recover . 

Hi lori,

Do you notice any difference so far by eliminating dairy? I have tried to lower/eliminate gluten and notice that I do feel alot better when I don't have it. 

Not yet Kay but it’s only been a week ... I think diet supplements can help but I honestly think this ‘thing’ has its own  timeframe ... it will go when it’s ready .

I always ate well worked out mostly vegetables no bread or pasta sugar so I still got sick ? Don’t get it . 

hi sophie. im interested to know how you are going with your recovery. your story is a splitting image of mine (currently at 13 months). thankyou

Hey Sweebee, just a wee message to say hi let you know you're still in my thoughts and hoping that your week has been settled and not feeling too bad. Remember message any time and thanks for all your kind words to me over the past few weeks, has really meant a lot!

Craig

Hello...

I am 43 and got diagnosed with mono o October and although my fatigue got better and glandular fevers and headaches got better, my glands are always swollen and my throat is on/off very sore. I am at my wits end. Will I ever be better???

Maria from Hamilton, Ontario Canada

so sorry you are suffering .. i am at month 10 with ebv and mono ....do you have ebv also?

it does take a while to settle down and i know as have been through hell with this . make sure you are resting doing short walks.... eating healthy .

everybody is different and unique so you may get over this soon.

Hi there Maria,

So sorry to hear you have been going through a tough time with mono, I really empathise having went through a hard time with the virus myself many years ago. It was the October I became ill too and by the January I was so weary and drained and fatigued, and also had pain in my glands, one in my neck in particular which bothered me a lot.

Please know Maria that things DO and WILL get better - it took me a number of months to get to full recovery but I did get there thanks to God only. It just takes time unfortunately with this Maria, and it is a normal course for your body still to be feeling rough and beaten up at this time but it won't last forever, even though I know it doesn't always feel that way when going through it. Hang in there Maria, and just take one day at a time, I remember all too well how just getting through a day with this virus was draining and a big achievement, so hang in there and get plenty of rest and remove stress as much as possible, give yourself the time and space your body needs to recover. And even if it takes a little time for full and complete recovery, don't panic because it WILL come - you will get your breakthrough.

Taking vitamins and herbs helped me a great deal during recovery, a good strong multi-vitamin per day (I take Immunace Extra here in the UK), higher doses of Vitamin C (1000mg-3000mg per day), a B100 complex vitamin and / or Co-enzyme Q10 (GREAT for nervous system and energy levels) and immune boosting herbs like siberian ginseng, echinacea and oregano. Of course I'm no expert on these things, always wise to check for interactions with any conditions / medications when taking vitamins / herbs, but they can help your body cope a bit better through the horrible time of this virus.

Thinking about you Maria and hang in there - this forum is a great one with some really good and encouraging people on it, much better than all the scare stories that googling tends to throw up - message any time and let us know how you are doing. Hoping for a settled weekend for you and remember be kind to yourself, take things slowly, you WILL get through this - truly I believe that given my own recovery experience and reading the recovery stories of many other people who went through such horrible times with the virus over a number of months.

Craig

Hey Lori,

Hope you are feeling a little better today, just a wee message to let you know still thinking about you and praying for you and believing in your recovery - hang in there you ARE getting through this, I still have strong faith in that.

Hoping for a good and settled weekend for you.

Craig

Lori....

Isn't mono caused by EBV? I understood it is the same thing..

Maria

Craig.....

Thank you soooo much for your advice, encouraging words and kindness. I really needed to hear that one day this too shall pass. I am a widowed mother of two young children and always feel run down...lol My kids are only 6 and 7 so I don't have alot of time for rest.I am having alot of issues with an on/off sore throat and have a gland on the right side of my neck that has been causing me alot of discomfort. I can't wait to feel better! Please feel free to message me anytime. Your message has given me some hope. I am going to take your advice on the Vitamin C and b. Thanks for giving me some hope. My bloodwork is still showing elevated wbc amd rbc and lymphocytes.

Thanks again,

Maria

if im right i think its a coinfection ? i had ebv 11 years ago but with no mono ...so just felt very strange but no fatigue .

Hi Maria,

Oh you're very welcome, even though it was 12 years ago that I had this virus Maria it was such an awful and intense experience that I really want to come onto the site to let you and others know that there is hope and there is recovery from this thing, that it does get better and that there is light at the tunnel, which can be sooo hard if not impossible to see when going through this.

I can only imagine how tough that must be to be bringing up your two children yourself Maria and to do that when going through this horrible virus must be such a strain and challenge. I do hope that you have some good friends / extended family members around that are supportive, helping and understanding and can help you out - I was very lucky to have good friends and family during my recovery and know I wouldn't have got there without their help and of course God's healing.

Hoping so much that your troublesome glands settle down soon, it really is awful. I had what they called a 'reactive' gland in my neck, which was just a swollen and painful gland on my neck throughout the months I was coping with the virus but they did an ultrasound and said that it was a normal thing and just as a result of the mono, and thankfully it did settle down as things started to improve - but it was probably one of the symptoms that lingered longer than the others but eventually it did settle and go away - I believe yours will too Maria, hang in there and thinking about you.

And remember you WILL get better and get the breakthrough you need - it's hard to be patient I know but just keep in mind that this thing is a nasty nasty virus and your body just needs extended time to recover often, it's not just like a normal flu or cold or whatever, it really needs time but with time you will get back to full health again Maria, I thought I would never get there at one point just grateful that God got me through and helped me recover and back on my feet again.

Message any time too Maria - it's a great forum for advice / encourgament, and do keep in touch and let us know how things are going over the next while.

Craig

Yes Maria it's the EBV virus that causes mono - I get confused too as sometimes people talk of it as two separate things, but EBV is the main virus responsible for mono.

Craig

Maria I started getting sick around the same time...end of nov. I still have issues with my throat hurting too. It's on and off now instead if constant at least. My bloods are luckily all normal...I wasn't tested til 5 ish weeks after I started feeling sick bc I also had strep so they blamed that for me feeling sick til I finally asked to be tested. I feel mostly better besides being tired and less motivated. I am having very bad sleep problems though. Insomnia, waking up a ton and I wake up really hot and a little sweaty a bunch of times many nights. Some nights I'm fine but now I noticed on days where I've done a lot, the sleeping is a mess. Wondering if anyone else has prolonged sleep issues with this virus?! I dont have fevers or anything luckily. I have two 15 month olds so I have had no rest.

Hi Jenna,

I have read lots of people talking about issues with sleep during the virus, it does seem that it can be a common thing. I wasn't too bad myself with sleep during the virus, but I do remember a phase where I would wake up in the night and find it tough to get back to sleep again, even though my body was tired and needed sleep. It is frustrating for sure, sometimes taking herbs that help soothe the nervous system from dinner time onwards can help, things like cayenne pepper, feverfew and chamomile I've found helpful recently myself.

Hang in there Jenna - remember just take it one day at a time and that you will get through this - please be encouraged that this thing does get better with time, but I know that doesn't make it any easier to cope with in the moment. Getting through a day with it really is an achievement in the intense phase, and it must be so hard also to get rest when you have two young children. But do try and do something each day to help you unwind and get some rest if at all possible. Thinking about you and remember you ARE going to get fully better from this with a little time.

Craig

Hi Craig....

Thanks for all the information you have given me. I am feeling a little better hearing that your gland swelling and pain lingered a little longer but did go away. I was starting to think that this was my life. Does the mono always stay positive when you have bloodwork?How long are you contagious for?

My doctor doesn't have alot of answers for me. This Ebv is horrible!

Ughhhh

Maria

im not a doctor but have read that youre only contagious a few weeks or days at the very beginning

Hey Maria,

Absolutely the gland swelling was one of the lingering symptoms for me, it still bothered me intermittently even when I started to feel a bit better but it did go away eventually, really want to reassure you that this kind of thing can be very normal through mono and it will get better (even though I know that doesn't always help much when dealing with it in the here and now and when it's so frustrating and painful).

I'm so sorry to hear that your doctor has not been too helpful in providing answers / guidance. I've had this experience with doctors too and it frustrates me so much when you really need a bit of support, reassurance, time and guidance that it's not easy to find a good doctor who really takes the time to help and support.

I'm no medical expert in any way Maria so don't take my word as read on anything in terms of the medical side of mono, but my understanding is that mono just shows positive in your blood tests within the first few weeks of feeling unwell with it, and usually after the first couple of months the blood tests show normal again even though most people are still feeling quite unwell with it at that stage. I had a number of blood tests during the illness and it was only the very first one and one much later on when I had a mini reactivation that showed positive, all the others showed normal even though I was still feeling so unwell and it took me a number of months to fully recover.

I also asked about the timescale of being contagious too with the doctor and again found it hard to get a definitive answer. It seems it can be different for different people, but I believe I unfortunately passed the virus onto another girl I was kind of dating and that was about 7 or 8 months after I was first infected. But again that was through kissing remember it's through saliva that this virus is passed on so others around you are generally not at risk, but just be careful with things like sharing drinking glasses, cutlery, things like that.

I totally agree how horrible this virus is Maria! It was really one of the worst experiences of my life and I absolutely want you to know that it does get better, even if it takes a little time, hang in there because you will get fully over this and back to full health again - remember taking good vitamins and herbs can help and just look after yourself, get rest when you can (I know it must be so hard when you have children) and talk to others who are trusting and understanding if you can too - that helped me a lot for sure.

Craig

Hi Craig,

So, I was diagnosed October 13th and I am still struggling with this swollen gland, fatigue and just feeling like crap. I have been having major anxiety attacks as a result.How long before this resolves completely? I am so sick of being sick..... 😭

Please give me some good news?

Thanks,

Maria

i have major anxiety too unbelievable ! so scary !

i got sick april last year so im almost at one year .

i am trying blood ozone therapy it has very good results for lyme and ebv its expensive but anything to get rid of this ... it can go on for years!!

Hi Maria,

I really do empathise with the struggles and suffering of this virus, really hoping you feel so much better soon. Six months of this feels like a lifetime I know Maria, I definitely want to reassure that it does get better, and that BY FAR these first six months were the worst and most intense. It still did take me a few months after that to see a major change, it was about 10 months I really felt a breakthrough and God started to turn things around for me which I was and am eternally grateful for. I'm not saying in any way it will be as long for you Maria, I just want you to know that it can be normal for it to take a little longer but then still go on and make a full recovery - I've read lots of people on the site here still be struggling badly at six months, like I was too, but then go on to make a full and complete recovery with a little more time.

It's only understanding to have anxiety during this Maria, I did too and it really knocked my confidence for six and took a little time to rebuild again. But you will rebuild again Maria, things won't always be this hard and as you start to feel a bit better over time your confidence will return and anxiety levels will settle, please be assured.

Thinking about you and hoping for a good and settled day today - remember just keep taking things one day at a time. I'm having a rough week with neck pain which has got me in a bit of a state too and just praying for God's help for us all.

Better times are ahead for you Maria - I truly believe that God is going to heal you and bring you back to joy and good health again with a little more time - hang in there. Even thought you're weary now, your body strength and resilience does return again with time, truly it does and will.

Craig

Hi Lori,

Hoping that you have managed okay this week with getting to the ozone therapy appointments, just wanted you to know I've been thinking about you and still trusting that God's hand is moving in your situation and that a change / breakthrough is about to be seen.

Been a real tough week for myself too, my neck pain and tightness is really bothering me and so much hope and pray that I don't have to go through anything as long term or painful as this as have been through with my back, praying for God's healing and mercy for us all. Praise God for his faithfulness, healing and protection through storms in our lives.

Hang in there Lori, you ARE going to get better - 100% I believe this.

Craig

Lori....

Please tell me how it is working for you. I am sooo desperate to try anything.....I have had symptoms for 6 months. I can't remember the last time I felt well.

Maria

Craig,

I hope your neck is feeling better. Do you think it is related to mono? I hope you feel better real soon.

I have been struggling today with light headedness , extreme nausea, my teeth are super sensitive too and fatigue. I truly am ready to give up.

May God bless you Craig and heal you!

Feeling depressed!

Maria😢

gosh yes i know how difficult this is .. its horrendous. ive done 5 ozone sessions up to now with high vitamin c and a myers cocktail.

i had a good day friday but an awful ebv day yesterday. you do get detox symptoms not sure what they are yet .... i know i feel very down and depressed but that could just be the stress of all these treatments .. its a journey to get there and not a pleasurable experience and with anxiety from ebv ....its a real chore .

Thanks so much for your kind words Maria, really need that today as have had a really tough weekend, one of my worst in a long time. The neck pain has really frightened me and finding it hard to relax and get any relief, grateful for your prayers for my healing and blessing Maria, it means so much as just feeling unsettled and overwhelmed at the moment.

I was about 25 when I got the dreaded mono Maria, it was an awful experience and I just want to really encourage and reassure you that you will get fully better - this thing does go away but it can take a bit of time. For me the first 4-5 months were by far the worst and most intense, but it was really about 10 months before I really started to feel a major breakthrough towards full recovery - I'm not in any way saying it will be that long for you Maria it truly is different for everyone, some people seem to recover quicker than others, but please don't panic if it still takes a few months to get towards full recovery because it definitely will happen Maria.

Praying for God's help for us all, having a tough few days and just praying for the Lord's hand to move on our behalf today - grateful He is with us in the hardest of times.

I can only imagine how tough it must be to go through this as a mother of two young children. Thinking about you praying and I'm believing that God is going to give you all the strength you need to get through each day, just hang in there and don't panic, God will get you through this, praying for His protection and peace in your life life today.

Craig

Oh Lori I justed to say I was still thinking about you and hoping this can be a better week for you....I'm also having a tough time myself right now and praying for God's help for us both and us all on the site. Thinking of you Lori and hang in there, grateful Jesus is the great I Am and He has the power to break all our chains. Praise God.

Craig

Hello im new to the site and found it when i was wondering if my mono is normal. Doctors are confused and have told me that this shouldn't last this long. While reading coments ive noticed that some of you have had Mono longer than me. I am in my late 20's. I have almost all the symptoms of mono except fever. The biggest problem for me is that i cant eat or swallow medication. Im on a liquid diet.

Hi Diana,

So sorry to hear that you've been going through mono and having a tough time with symptoms and your diet, I really do empathise having went through a tough time with it myself a number of years ago when I was a similar age to you, in my mid 20s.

I do want to reassure you that it can be normal for it to take longer to get over than some doctors might say, but that it does go away and absolutely I believe given me own experience and reading the stories of many others that you will get back to full health again. My doctor told me it would probably take 6 weeks to get over but in reality it took me a good bit longer.

Hang in there Diana, so sorry to hear you've been unable to eat or swallow medication, what a horrible experience. I am a believer in God and that He heals and I will pray that He will bring you back to full health.

Although it is so frustrating and horrible to go through, believe me it does get better with time Diana. It took me quite some time but with God's mercy only I got back to full health and didn't have any problems after that, and that's coming from someone who has quite bad with symptoms for a number of months. I'm not saying you will be like that for months though, everyone's situation is different, some seem to recover quicker than others - but you will get there. Thinking of you and remember get plenty of rest and stay as stress free as you can (which I know is so hard because the virus in itself causes so much stress when not feeling at all well) - my experience was that pushing through with this virus is not the right approach, it really needs time and rest for your body to recover - and it will!

I'm not on the forum here as much as I used to be but feel free to send me a private message any time you want to chat, I really do understand how awful it is to go through mono and wouldn't wish it on my worst enemy. But there is hope and recovery, keep that in mind.

Craig