Mono recovery story collection!!

Hi Kay,

Goodness you have been through such a terrible time this last 13 months by the sounds of it, I do empathise having been through such a hard time with the virus myself many years ago. And to not have a diagnosis for so long must have been so draining and worrying - absolutely I agree that the symptoms you describe do sound like you have been going through glandular fever / mono this period. 

I do want to reassure you that things do get better - God willing you won't have to go through anything as intense or as severe as this last year - my experience was that Year 2 was one of recovery and liberation, where started to feel more normal again and things did get better. Please be assured what the doc said about post viral, in the vast majority of case it doesn't take years or anything like that, many go through a brutal year like you have been through with this and it does take time to get back on your feet again, but absolutely recovery will come Kay - hang in there and thinking about you.

Sounds like you have been doing all the right things to help yourself - vitamins and herbs helped me too, including a good strong multi-vitamin per day (Immunace Extra from Boots is a good one), a B complex vitamin per day (great for energy levels and nervous system), higher doses of Vitamin C (1000mg-3000mg per day) and immune boosting herbs like oregano and siberian ginseng. Passion flower is a good one for calming things too as is Cayenne Pepper. 

I was a runner too Kay and thought I would never get back to anything like that after this virus -but I want to reassure you that I did, even though it took a bit of time to get my confidence and body resilience back - it does come and you do get to a stage where you feel like your body can cope with doing stressful things again without paying so badly for it afterwards. 

Thinking about you and believing truly that you are going to get FULLY better and that God is going to bring healing from this awful virus and time, like He did for me. Hoping for a good and settled week for you and hang in there!

Craig

Thanks so much Craig :-)

I wish i had found this discussion earlier when I was at my worst. It surely would have helped me through some of the dark days.

I was taking a B complex which my doc asked me to stop taking because my B12 reading on my test results were over 1000! At the moment I am taking Omega 3 fish oil with Coq10, vitamin d. I take the odd vitamin c now and then but will buy some today as you recommended plus a good multivitamin.

The other thing I did recently which has helped me along the road to recovery is to hire a cleaner. I have someone coming in fortnightly to clean the flat as in the early days I just did not have the energy and these days whilst I can do it myself without issues, I sometimes pay the price a day or two later when the fatigue set in.

I do hope I can resume running in the near future. I am a member of a local running club and I use to do parkrun every saturday morning but have not managed to go down to the running club for a run in over a year. parkrun i have done walking in recent months.

Hi Kay,

I agree there are some really kind and genuine and knowledgeable people on the forum here, I often think people can gain 1000 times more from visiting somewhere like this and reading the encouragement and support of others than you get from visiting your doctor often, with too many doctors seeming either not to fully understand how horrid this virus can be or to show the compassion needed when you are feeling fragile due to it. 

I take those vitamins too Kay still just for my own health and wellbeing. I'm not a medical person or doctor or anything, and of course always listen to what the doc says, but my understanding from what I've read with B12 and most if not all of the B vitamins is there there is no upper maximum daily limit set - the B complex I take too has high doses. From what I know, it's just a case that excess B vitamins are often excreted through your urine, that's why often if taking a B complex supplement your pee can go bright yellow - that's nothing to worry about very normal indeed.

That sounds wise hiring a cleaner, that was a good step you have taken to help yourself, definitely not overdoing things right now is absolutely the right thing to do. Oh I loved my running too when I was younger Kay, I was in a running club too and loved it so much and I found it really hard too when this virus hit me to have to stop that. But you will get back to it again, I was able to, it took a little while but I got there, and you will too Kay I truly believe that. Walking is good and if you can get out for even a short walk each day, just at your own pace and to get some fresh air too, that was something that really helped me during recovery.

Thinking about you and do keep in touch and remember your body resilience will come back and the fatigue and horrible symptoms will go with time - it's so hard to deal with I know and just focus on each day at the moment, I know for sure getting through each day with this virus was an achievement in itself, so don't put any pressure or expectations on yourself and be kind and understanding to yourself right now! Hang in there - you ARE going to get through this Kay and get better.

Craig

Hi Craig,

Thanks again for your kind words.

Yes, this is a great support network which is what I really needed all those months ago. The docs plus friends and family all made me feel it was all in my head which made me doubt myself at times. I am so glad I now have a diagnosis and as bad as it is, I felt like a weight has been lifted off my shoulder now I know what it is albeit, it took 13 months to get here!

I agree with you when it comes to B12 as it is meant to be a water soluble vitamin. According to my test results the normal range is 197 - 771 and mine is 1276! I had the bloods taken shortly after I had taken the supplement so not sure if this is why it is so high. The morning after taking the test I got a text msg from the nhs saying that my B12 level is extremely high and if I am taking a supplement I should stop so I haven't taken it since. 

How long did you not run for? I think my last proper run was about 3 months ago and that even involved a lot of stopping as I had really bad lower back and left hip pain. I am still seeing a chiropractor for that and whilst they have given me the go ahead to go out and have a test run, I have been abit scared to because from past experience over the past year, every time I ran I was wiped out for a few days after and so I thought it wasn't worth yet.

I have no doubt I will get through it as I have indeed come a very long way. If you had asked me that question about a year, 10 mos or even 6 mos ago I would have thought differently.  If I knew what I was dealing with all those months ago I surely would have taken some time off work but because I had no idea, I tried my best to carry on with my work life which might have delayed my recovery abit.

Hi Kay,

That must have been so hard going through this time without knowing what was causing you to feel how you have been feeling, I know it's not nice to know it's been mono but as you say just to have an explanation and to know why this has been going like this is such a help and hopefully lifts a weight off your shoulders as you say. 

Oh it's hard to remember how long I was out of running for as was a long time ago, but I know that I did manage to do some lighter running later on into the second year of the virus, I was always worried about pushing myself too hard and it took me a while to get confidence back to train harder again, but I did get there but it's important not to do that too soon, especially if you have other injuries too.

I empathise about your back issues too Kay as that has been something which has bothered me the last 15 months or so and has got me so down at times. I've been seeing an osteopath, feel like I've tried everything too! There's a good book called 'Back Pain Decoded' by Robert Shanks which my osteopath recommended. If you find any techniques / things that really help with lower back pain do let me know as would be very interested to hear!!

Oh it's only normal you would try to carry on with your normal and working life, especially at first when not sure what's going on with this - I did the same at first but had to be off work for quite a time in the first year - don't beat yourself up it won't have delayed your recovery, remember this thing is not your fault and you are going to get better from it still - I truly believe that thanks to God - hang in there Kay and message any time!

Craig

Thanks again Craig! Appreciated.

I am hanging in there, though today feeling abit groggy as the sleep hasn't been too great the last few nights. I plan to catch up on some rest this coming weekend!

Wow! I was reading your post and all of your symptoms were exactly what I had. 3 hours of sleep for months and everything else. I am slowly recovering myself. I wonder if ebv has different strains? Some people recover quick others it may take years. Glad you are doing better.

Hi Brent,

How long have you been going through yours? I think I deserve a medal for the longest sufferer at 13.5 mos :-).

The past year has been like a year of my life totally erased. I turned 39 yesterday!

Do you have any tips for recovery?

Btw, where are you located? 

I have had a lot of the same symptoms as you and a few others but basically a lot like yours. I’m on month 9 and doing way better. It is so crazy to say the least how long this hour virus can linger. 

I can complain agree with what you said I too feel like the last 9 months of my life have been stolen. All we can do is rest eat right and be strong. Also being very thankful for the amazing support Craig has given everyone of us. This place has helped me so so much with understanding this horrible virus and no thinking it’s all I’m my head. I pray for everyone one here. Be strong we can get over this time in our lives. 

Best wishes Dave 

Hi David,

Looks like I was not alone at all despite feeling that way for all those months. I was at a point where I considered handing in my resignation at work as it was such torture making it through the work day. I also had the odd night when I felt suicidal because of the lack of sleep. I was waking up every morning between 2 and 3am without fail and could not sleep again. I did not have to get up for work until 7am to be at the office for 8.30/9. By the time I got to the office each day I felt like I had already done a days work as I had already been awake for 6-7 hours! I am so grateful each day for the improvement I have made and I never want to be in such a dark place again. 

I got Real sick January 2017. I got infected June 2016. I went through a very stressful divorce at the same time. I have worked through most of this illness. I would take a few weeks off here and there. I live in USA. Looking back should have taken more time off. Only allowed 12 weeks off in a year so I had to use them wisely. Also have a lot of bills to pay.

Hi Kay / Brent / David, 

I think you all deserve medals for what you've had to go through, it is plain for me to see in each one of you the courage you have shown over a period of time to deal with what you've had to deal with. It is just so awful and I know I might sound strong and positive on here in my messages, but believe me when I was going through this I felt so weak and discouraged at times like I know each one of you has at different spells, I wasn't as courageous I went to pieces at times I really did. It's easier when it's in the past and you can look back and say praise God that He pulled me through that, but it's frightening and awful to go through each day not knowing when it will end and how you are going to cope and get through it. 

Thinking about you all and hoping for a much more settled weekend for everyone guys and thanks so much for the kind words, it means a lot to me and I'm very grateful and do empathise because still in a tough situation for other pain and health reasons myself and trying to keep going which finding hard right now too. 

Craig

 

Hi Craig,

Thank you so much.

It is really reassuring knowing that I am not the only one who is going through this thing! It sucks.

I am having one of those days today where I woke up feeling like I had been run over by a truck in my sleep. I so could have stayed in bed today but alas, the show must go on and I will make it through a full day at work.

I remember those days prior to this illness when I would be wide awake and ready to go by about 5:30am and would even go out for a 3 mile run at 6am before going to work. Will I ever have those days back?

It has been awful, hasn't it. At least the majority of you knew what you were dealing with. The hardest part for me was going on and on for 13 mos before knowing what was wrong with me. It was not fun at all. I had come to the conclusion that I was just getting old and getting abit mental. Now I have some clarity and know it was this awful virus messing with my head.

 

So you are about 2 years in?  And there I was thinking i was the longest sufferer :-)

Lucky you allowed 12 weeks off in a year. I am entitled to 5 weeks holiday and because of the fact I didn't know what I was dealing with for 13 mos, all my time off meant some form of activity holiday which left me shattered. 6 weeks ago I went hiking in the swiss alps and boy did I pay for it! If I had known what I had all these months I surely would have been able to get some sick time off but unfortunately I was lead to believe it was all in my head so the only thing I could do was to carry on as normal as possible hoping one day I would wake up and it all would have miraculously been a dream.

I’m so sorry you had to go through this horrible horrible virus without knowing and thinking it was all in your head.  I can completely understand what you went through because I had the same struggles too , and I knew what was wrong EBV. Well at least now you know your not crazy. Knowing what’s wrong now has to help you get on a road to recovery. You have my prayers and many others too. Be strong good health is coming. We can get out of Epstein-Barr Virus jail soon. 

Dave 

Yes me too ... spent 6 months working out like a maniac . Had no clue until I put 2+2 together and demanded a blood test specifically for EBV . All my blood tests beforehand had come back normal so dr said ‘nothing wrong with you ‘ .  If I’d only knew I could have possibly saved myself of 6 months of HELL! 

Gosh don’t know how anybody works during this .... I don’t and literally could NOT work during this time . All I’ve heard is rest rest rest ..

I guess I must be superhuman😂

Yes me too ... I’ve broke down so many times crying which I never do . This ‘thing’ has scared me to no end ! When your body is alien to you with all these symptoms you just don’t know what to do . There is never an end in sight and each day is like groundhogs day . The stories on here have given me hope ... people continuing to work .. people who have overcome it and have resumed their lives ... hopefully I will be there soon ! 

Yes I thought it was all hormones but then realized nobody I knew had or was going through the same thing . I had a lightbulb moment remembering a test I had years ago which showed EBV and coupled with little sores at corner of the mouth ... bingo ! 

I frequentiy had those sores at corner of my mouth after a night out ... nothing crazy just dinner drinks but always thought it was the glass at the restaurant . 

Now I know I have to always keep my immune system boosted and ALWAYS take lysine .

Hi Kay,

It is amazing that you've been able to keep working at this time, I know when I was unwell with it I had to take extended time off work. Just remember to put your health first and if you need to take some time out, hard as it is I know, please do it Kay because sometimes with this thing it just gets impossible to keep pushing through. Hoping that you are able to get plenty of rest and that your work can be understanding and even allow you to reduce hours / stress if that would be helpful. 

From where I was during the virus to my recovery period and the aftermath since, I absolutely believe you will get back to those days where you are fit and feel like you can get up and be physically active again. It didn't come overnight with me, took me a while to get confidence in my body physically and also mentally to have the confidence to push to levels I used to, but it does come back with time Kay. Still thinking about you and remember message any time! It's a good community on here I really enjoy chatting with such nice folks, there are so many courageous and wise and genuine people on here and I have learned a lot from everyone! This is NOT going to be this way always Kay and you are going to feel like your old self again, even if it's not today or tomorrow or next week, it will definitely happen. It's so hard to be patient and ride this thing through, it takes its toll I know, just coping with and getting through each day is a massive achievement - remember that and be kind and understanding to yourself because your body has been going through a terrible experience.

Craig 

 

Definitely Lori there is hope and that's the number 1 thing it is absolutely really want to communicate to everyone on here. I was like everyone on the forum here, at times felt hopeless with this and just didn't know what was happening or what was going to happen in the future, thinking that good health may be gone forever.

But it's not the case Lori, you've been going through a living nightmare by the sounds of it, I can really empathise and want to assure you there is another phase to come and its one of recovery and getting your life back again - it is just so frustrating and hard to cope with mentally as much as anything that it takes time unfortunately. But even if it still takes a little while for full recovery, I truly believe from my experience at least that you won't have to go through another 6 months as awful as what you've just been through - hoping and praying for that and thinking about you!!

Also thinking about you David!! Reading everyone's comments about working and everything, absolutely don't beat yourself up if you have tried to carry on working or thinking that's contributed to things going on so long - everyone tries to push through at first it's only natural because we want to get on with things and it's not always the case that we understand how this thing can go in the early stages. 

Hang in there guys and remember if you are still working, just be wise and sensible and go at your pace not the pace or pressure of others (easier said than done I know)!!

Craig

Thanks Craig. You are such a great guy. I do really appreciate your kind words. Maybe in the coming weeks I will have a word with my boss and explain to him in details what I have been going through and see if he can make some adjustments. Though I have been working throughout, I find I get stressed more easily and get really snappy at times towards my colleagues. 

Thank you Craig ! I am just mad at the world right now and keep thinking if only ... if only I was diagnosed 5 months ago at the ER I may be better by now .

I just wait all day to close the curtains at 7pm and then do it all over again the next day and the next day ...

It’s been hell and especially doing it all alone . I’ll get through it and hopefully be well soon .

it's understandable Lori to feel that way, I went through periods of real frustration and anger as well that I just couldn't seem to move forward. Channel that energy into recovery Lori, and don't use it if you can by dwelling on the past and what ifs (I know that's easier said than done). If it's any consolation, the nature of this virus means if you had been diagnosed earlier it would have been helpful in terms of giving you an explanation for what's going on, but it is likely that the recovery time would still have been the same, so don't beat yourself up you haven't done anything wrong and it's not your fault. 

You will get through this I have faith in that, it's the old cliche but it's so true you can just take one day at a time with this. Some days are so hard to get through I remember, so just managing through those days is a massive achievement, and remembering not to beat yourself up and remembering there is life beyond this illness, even though I know it doesn't always feel like it when going through the darkest days and moments. 

Craig

Thanks Kay, yeah definitely it sounds like the right thing to do to explain to your boss. It's so hard to get others to understand how this virus affects you, when people see you out and about and at work and doing things, they think you look fine so you are fine when it's not the case. Hoping that you have a boss that is understanding and takes on board what you're telling them about how bad and exhausting the symptoms of this are. It's natural you would be more stressed and edgy with colleagues, especially any muppet ones that annoy you!

Craig

Thanks Craig. I will do. Will keep you posted. Hopefully he will be understanding.