Mono (glandular fever), guilt, and desperation

Hi rl.

The anxiety is the worst, Mine is going away after six months, but I still feel it every once in awhile, listen to your body and rest as much as possible.

 

I've also had anxiety but it passed within 2-3 months almost completely. Mine wasn't completely related to the disease. Now I experience it only rarely and mildly when symptoms overwhelm me.

Your anxiety may be very dependent on your physical health. I've had mono since October also and had a few better periods but mainly horrible relapses and I'm in a very bad relapse right now.

Anxiety is very very tiring and scary but it will eventually pass. It will pass together with the illness or maybe even sooner.

Have you experienced anxiety before the GF?

There are several people here in their 6th, 7th or even 9th month. We're expecting to get better. Craig got better after his 8th or 9th month, I hope we'll get better at least as soon as him.

Hi Rl,

Please rest and don't expect friends to understand how you feel. Even those who have had it but experienced a very short recovery time. Each of us have different experiences.

Mono gave the best advice which is rest.

I'm nearly in month 10 and I am just now able to have enough confidence fo drive short distances on my ok days.

Anxiety is quite common to happen with this.

We are all here to encourage each other .

Rhonda

Hi and thanks for replying, that's quite reassuring!

I've never really had anxiety before other than suffering from a bad break up a couple of years ago where I had insomnia which led to anxiety due to lack of sleep. I feel like it's kind of the same thing where I feel it because I am overtired. You're right, it's so scary, especially because normally I'm very outgoing.

I hope you're feeling better soon!

Hi Rhonda,

Thank you for replying, and I hope you are feeling a lot better soon. Luckily I don't seem to have it quite so bad, I think the flare up is mainly down to exam pressure.

Luckily I have a very supportive boyfriend who is there when you just have those days when you feel completely pathetic - he never questions it or makes me feel like I'm using it as an excuse, which can happen quite frequently amongst others.

It's just such a shock for me to feel like this as I used to be one of those people that couldn't sit still for 5 minutes. Now I can sit on the couch and 2 hours will have gone by without me even realising!

Thank you for replying so quickly, I appreciate your advice

Rl

Hi mono

Thanks for replying and glad you're starting to feel better.

Did you find anything that helped to alleviate the anxiety at all? Or is it something you just gotta ride out?

I personally couldn't find anything of help when I had it. It will eventually pass if it's illness related, this is the good news. Only some (not all) of the people that always have anxiety attacks for no reasons or for little reason have it a long time or all of their life.

I'm feeling horrible right now, like I've got a very high fever but without having it, difficulty breathing and shakiness all through my body. I don't know whether to call and ambulance or take a sedative and try to make it to the morning. Tomorrow I have to go to work also. Really don't know what I'm going to do. I'm sick and afraid, on the other hand I know doctors cannot help me unless there's something new in the tests (which I doubt but also fear).

Hi rl,

No real solution, I would try to sleep or distract myself with reading or just something to get my mind off the feeling, its terrible.

Hi Path,

Sorry you are having a relapse, hopefully it passes soon, maybe see the heart doctor and they can do a moniter study, probably just this stupid virus though.

Hi everyone,

Sorry I've not replied much last few days, having a few issues myself just hoping and trusting God will help us all through our challenges. RI, anxiety is a terrible and awful thing, it won't last forever it really won't and you will get strong again and get through this time - it's natural to feel that way given the terrible experience of glandular fever, but things will get better for you and everyone on the site here I truly believe that.

Thinking of you all and hang in there

Craig

Hi Jo,

I understand the need to just feel normal again! Hopefully this relapse will not last long.

Jesus has been my help and strength.

I believe we will completely recover.

Rhonda

Hi Jo,

So sorry to hear you've been having such a terrible time with glandular fever. I was very much on the same cycle as you when I had it, I caught it in October and even by May the next year I felt my progress was minimal and at spells it was like I was going backwards. It's a horrible thing to go through but just want to offer hope and reassurance, because at this stage I thought I would never get better, but by August i started to notice a real change and I was gradually able to live a much more normal and full life after that on the road to full recovery.

Just want to let you know there is hope and you will get through it and make a full recovery even though it seems never ending. Taking some good vitamins and herbs if not already doing so, will help boost your immune system for sure.

Most importantly I agree fully with Rhonda! Jesus will heal and break the power of this dreaded virus and I fully believe without any doubt in your recovery Jo and your recovery too Rhonda.

Take care and thinking of you

Craig

Thanks Rhonda and Craig. Yes its a horrible illness indeed. Did you get times where you felt better then crash again? I'm more confused today as I went to a new dr, gave her my reports and bloods from hosp and prev drs and shes not convinced its from epv now? Said i had epv in my system but looks old, it showed negative on some other blood count? Had this done in Dec. But then later on she said in feb a dr had wrote down reactive in a report in Feb? So shes doing her own blood tests to see what shows up? All I know is I've been fighting this since oct and every symptom is epv? Just wish I could have a proper answer. Hope you are all on the road to recovery. Yes I'm taking vit b, multivitamins, magnesium and vit d. Any others you can recommend? Thankyou.

hi Jo

I am really sorry that you are feeling this way.

Yes, it is a horrible illness... It also made me feel worse after I felt better. Now waiting to feel better again.

Hang in there.

Natalie

Thanks Natalie. How long have you had it for? Its so hard to describe it when other people ask whats it like? i'm sure everyone thinks I'm going nuts lol. Hope you are over the worst of it.

Hi Jo

I had it for nearly 3 months now. It is up and down and up again. I learnt not to overdo as it hits me very badly then.

Me too I hope I am over the worst. Time will show.

And yes, i am convinced too that people think that I am nuts when I try to explain how it makes you feel. But I guess it must be hard to understand for someone who never was through it.

I hope you will be on the mend soon and that you will have all what you wish for back.

Natalie

Hi Natalie thats good that you are learning to take it easy by not over doing things. Its hard working, i've used up my sick leave and feel guilty so have to keep working through it then crash in the evenings when I get home. Think a late night for me now is 8pm lol.

Onwards and upwards for us all lets hope.

Hi Jo,

I'm on the same timeline as you. First symptoms at the end of October, left work early November, and haven't been able to go back.

The first two weeks of February were good and I thought it was over. Then, it was a slow decline through March. April was pure hell - I barely got out of bed. My boyfriend has been caring for me since November since there were many days/weeks that I could not do the basic things to care for myself.

In April, my doc prescribed bupropion. He said it helps some people with post-mono fatigue syndrome but that it takes 4 to 6 weeks to help. Even though the odds weren't great, the risks seemed low and I was willing to try anything. At the five week mark, I suddenly felt like someone pulled all the fuzz out of my brain. I could suddenly shower without having to sit down. I'm getting up and dressed every day, and even doing all the grocery shopping and little errands for the household. The nausea and anxiety drastically improved.

I saw my doctor yesterday and he said that if this continues two more weeks, I can go back to work. He said not to make any drastic changes to my exertion because mono can really mess with you. I have to stay on the drug at least six months because there's a high risk of mono relapse if I stop.

To get ready to rejoin the living, I'm taking two walks a day for between 10 and 45 minutes. I would have thought that was a crazy idea two weeks ago. My back hurts and my legs shake now that I'm moving because those muscles haven't been used for so long. I'm able to drive again. I'm able to follow and participate in conversations again.

I'm trying not to get too excited, but I've been in a wonderful mood for six straight days now. Going back to work is a little scary because my job is very think-y and my head has been full of cotton and pain for the better part of seven months.

So, everyone, if bupropion is available where you live, I would strongly recommend it. It's an off-label use, so your doc might not know it can be used for this. My pharmacist was really interested to know what I was using it for, and that it seemed to work.

The way my doc explained it, EBV changes when you feel fatigue. The brain makes us feel overexerted before we do damage to our bodies. After EBV, that trigger point is unreasonably low so that we feel flat out exhausted from putting socks on. Our nervous systems make us feel dizzy, nauseated, and achey to make us stop doing a thing that can hurt us. Some people's brains reset automatically when the virus is knocked down by the immune system. Others, like us, seem to have mono for months: what he called post-viral fatigue syndrome. Nobody knows why EBV does this but a cold doesn't. The drug induces the brain to re-evaluate the level of fatigue that induces the exhaustion response.

After a month of no change, I was pretty discouraged. At around five weeks, I felt like a different person. Insomnia is an unfortunate side effect, but I'm so willing to trade in mono for some insomnia! It's been six wonderful days since my brain flicked the switch.

To all who are managing a job and kids while dealing with this: you are incredibly strong and caring people. I can't imagine how hard it must be and my thoughts are with you.

Craig has been saying it all along, but I didn't really believe him when he said this doesn't last forever. Now, I'm starting to (guardedly) think it could be true. Hang in there, guys.

Hi Sarah,

Glad to hear you are feeling better, I have also been feeling better in the last month, I had two days of feeling a little down on Monday and Tuesday, I think I was fighting off a cold/flu, today is better.

I am like you I can hardly believe that I could feel somewhat normal again, I actually went to a friends birthday and a mothers day.

As Craig says have faith that you will feel better, it just takes a long while.

Hi Jo,

I too got sick in October and have just in the last month started feeling better, went to mothers day lunch and a friends birthday this weekend and Monday and Tuesday were bad days, however I now feel better.

I think that you will have ups and downs but then good days will start to outweigh the bad. Hope we are all on the road to recovery.

Hi Sarah wow our stories are very similar. So pleased that you are feeling better past 6 days, its a great feeling isn't it. Makes you appreciate life so much more. Just a word of warning please do not push yourself to te extent of when you were pre epv otherwise it can creep back up, just go at a steady pace. Unfortunately I've had to work trough most of it, had 2 wks off at xmas when I was really bad then another 2 wks in Feb wen I relapsed again then 2 days last week. I've used all my sick and holiday leave now on this horrible thing. I'm only doing 4hrs a day at the moment til I feel well again. I will mention those tablets to my dr nxt week they sound great! I feel abit better today so hoping te worst it over again but like you say don't want to get my hopes up lol. You take care keep us updated with your good news.

Must have been something in the air last October lol, so many people seem to have got it back then. Glad you got out for a couple of days, i did too and like you paid for it after. Hope your good days outweigh the bad. Can I ask did yr bloods and is it ebls? All come back active? I'm confused with all these diff readings? Take care

Hi Jo,

Yes it sure is horrible, I remember I had times when I felt a bit better and felt like I was starting to make a little progress, then all of a sudden it would hit me and feel I was back to square one again! The key thing to remember though is that you're not back at square one, every one of those relapses or mini relapses is helping your body recover a bit more, and it won't be as severe as time goes on until it disappears completely. Often it's a very zig-zag illness, and recovery can be that way too - in my case it felt I was not making much if any progress for a long time, then all of a sudden I made a real big step forward in a short space of time.

Co-enzyme Q10 is good for energy levels too, and siberian ginseng and oregano are good immune boosting herbs that have helped me - worth a try for sure!

Thinking of you and remember you will recover Jo - without any doubt at all full recovery will come and full health will be restored thanks to Jesus!

Craig

Hey Sarah,

That is really great to hear that you are feeling some progress, just hoping that this continues - I haven't heard of that one that you have been taking but if it's helping that is great!

Remember if you go back to work just take things slowly still, a phased return is most sensible approach for sure, and remember there still can be some swings backwards and forwards, even when you're feeling overall progress and recovery - so don't worry if that happens and remember take things slowly in the beginning, build things up gradually and that makes recovery more meaningful in the long term!

Thinking of you still and still fully believing that recovery is happening for you

Craig

Hi Jo,

My blood work showed mono in October that cleared and then tested positive for Epstein Barr, high titers so my body is fighting it, equiviacal on one test so either heading into recovery or it could be reactivation, hoping for recovery. The blood work is hard to understand,

Definitely Mono the blood work is hard to understand, I don't know enough about it only that EBV generally shows positive in the early weeks of the virus but can return to normal levels in blood tests a good time before you feel better. There can also be mini relapses where is shows up as elevated again in the blood test, that happened to me one time and my heart sank thinking I had to go through it all again - if that happens to anyone don't panic, because it was nowhere near as bad and was only a very minor relapse.

I would encourage folks not to dwell on the medical side but just concentrate on rest, doing all you can to take it easy and live a stress free life whilst recovery, and as much as possible not to worry or panic (I know that's hard if not virtually impossible) because even when you feel at your worst, know that the virus runs a course which can take a few months for some unfortunately but that full health and recovery does come once you've went through this time. It's different for everyone though, some recover quicker than others.

Mono, what an amazing person you are that despite going through this you've come on to help others, it's much easier to do that when you're feeling better like me but at the time whilst going through it, a hard thing but shows me what a good person you are

Craig

I am new to this also. I have had glandular fever since July 2016. I have had a hard time also. I work 11 hours a day and I haven't had much time off. I have taken a week here and a week there whenever I get to feeling really bad. I have went through all the symptoms. fever, body aches etc. My biggest problem now is that I have severe joint and muscle pain. It is starting to effect my job. I just went through a unexpected divorce and I am a single parent, The stress of the divorce and my illness has put me on antidepressants. I keep hanging in there hoping that it will get better. I am also afraid that my illness may have turned into cfs. My advise is rest when you can. I try, but always seem to have alot going on. I have extreme insomina right now and that does not help either. worst sickness I have had in my life. I am 48 and they say the older you are the longer it takes. I have to keep the faith that I will get better one day. It gets hard being alone and sick. Has anyone had blurry vision with this illness?

Hi Brent,

So sorry to hear you've been having such a tough time with glandular fever. Just to offer some hope and reassurance, I went through a terrible time with joint and muscle pain and bruising for a number of weeks after around 9 months or so, and it actually proved to be the start of a greater recovery - it was almost like that period was like my body finally starting to kick the virus into touch for good

Just hoping that this can be the same for you Brent, I believe that you will still make a full recovery - 48 is not old by any standards and your body will get on top of this and kick it out for good, even though it's been going on for so long - hang in there! Thinking about you and do try and rest if you can - working those 11 hours days must be so tough and maybe it delaying things a bit - I know it's hard though. And remember you WILL get better! Without any doubt!

Craig

Hi Brent,

WIthout a doubt stress and having to work is very hard, especially with this virus. Rest as much as possible with your schedule. I have been sick since October and am just now starting to feel better and I am able to work from home.

All the best to you. Craig is a great source of comfort to us all, as he has experienced long term recovery.

 

Hi Brent, I too have had EBV since August of 2016....maybe July...diagnosed in August. I do not know how you have worked! I know the grace of God is what sustains us!

The joint and muscle pain is awful and nothing really seems to relieve it.

I have just very recently started to feeling better.

This virus is so horrible! I also had insomnia. Now it has changed back to fatigue and I sleep a lot day and night. I'm hoping when this goes away I will be fully recovered. Momo said she heard fatigue is the last thing to go.

Muscle and joint pain is slowly diminishing.

Please try to rest even if you can't sleep.

Keep the faith that full recovery wiil come.

Rhonda

Thank you for your kind words and hope. I really struggle not being able to do a lot of things with my 14-year-old son.it is really starting to wear on me. All I have the energy to do is work and come home and lay down . It is really starting to affect my performance at work . I just hope that I can hold on until I get better it is very depressing sometimes the antidepressants and don't work . Then that's when the bad thoughts Come. Thoughts like I will never get well or how can I raise my kid like this .

Thank you

Thank you for your support

Hi Brent,

We have all had the feeling of wondering if we will ever get better. You are doing the right thing by resting as soon as you get home as frustrating as it is, I am just now starting to feel better, such a strange and miserable experience.

I really do understand Brent, it's the most awful feeling in the world not only to be dealing with the physical effects but when feeling so low mentally as well and feeling like you have to keep going. If it's at all possible, even to consider taking a couple of weeks or something off work (if not more) just to allow yourself that more time to rest, I know it's not easy and not fair that the work place and situation is so pressurised for everyone these days - but sometimes it's important to really prioritise and your health definitely comes before work by miles.

Mono, you're so right that feeling of wondering when or even if you will see improvement or feel better is so frightening. It's the uncertainty of all this, especially when it can go on for weeks on end without seemingly feeling much change, which makes is so awful to cope with. Even if you knew for certain that someone would tell you 'Okay, you're going to be feeling this way for 3 months then you will get better and return to full health', it wouldn't be best scenario in the world but in a way there would be some relief and respite because you knew there was light at the end of the tunnel. 

Just to reassure that there is light at the end of the tunnel for everyone going through it, even if you have been feeling this way for a long time like I know many on the forum have been, don't lose hope because full recovery does eventually come from this terrible virus. Rhonda's words are the most important, keep the faith and I have total faith that you Brent, Rhonda, Mono and everyone who visits will make a full and complete recovery - without any doubt at all I believe that definitely 100% - just wish it could be instant, I know it's so hard to endure when going through it and thinking about you all.

Take care and hoping for a good day today for everyone (don't look too far ahead, each day is enough to cope with when going through the virus, and remember there will be much brighter days than this ahead)

Craig

 

Hi Brent

I know how you feel. This virus has made me very unwell too and affected whole my life bringing on terrible anxiety and depression. I too am a single parent. It sucks when you want to do things with your child and you cannot.

All I can say is give yourself right to feel this way. You are sad and for a good reason. Yoi are going through a lot woth illness and life changing event of divorce. It would be amazing if the antidepressants could change it. But I think as much as they maybe lift a mood a bit, they don't change the situation which is simply very difficult to deal with. Have you thought about therapy? I am considering this, as I also feel low, also had been thtiugh a lot in peesonal life recently and I can see that the trauma of the past and being unwell for so long impacts my habits and that in turn impacts the way I think about myself... I worked with many people who suffered from long term illness ans it truly affects anyone's head.Maybe therapy is something that can break this cycle. The only problem I have is that I cannot go far so I need to dind an affordable therapist who could visit me at home.

You are strong Brent. Very very strong. Just believe that. And hope that this virus will go away. Being a parent and being so unwell is one hardest thing I have ever done in my life. So I really feel for you and I truly admire your strength.

Natalie

I am beginning to think that I need to take a leave for several weeks. My doctor thinks at this point I need to stay active. He put me on bupropion to help with the aches and give some energy. My biggest issue right now is insomina. I guess I have gotten so use to working feeling like crap that you sorta get use to it to a degree. Then I have those moments when I can't do something with my kid and I break down. I was beginning to get real depressed and lose hope that I will never be well again until I found this site. Your story gives me hope. I read it every day sometimes 3 times a day when I get down. Thank you for coming back and spreading encouragement. I have to keep the faith and push on. I have had some dark days the past 12 months, but I keep pushing maybe one day it will get better.

It is a strange diease. It effects your thinking, body and soul. I have never experienced anything like this in my life. The depression is a big one for me. I have also had a bad 12 months with a divorce also. Mono really came at the wrong time for me. I had to spend my first Christmas not as family in 19 years laying in the bed praying for God to make this diease stop.

Hi Natalie

When I read your post I could do nothing but cry. the trauma of divorce and having mono at times has taking a large toll on me. The diease brought on so much more depression on top of what I already had. There were times when I prayed for God to just let me fade out in my sleep, but when I look at my son I realize that I must push on. I have never been this sick in my life. I have some good days and some bad days. The anxiety that mono brings is ruthless. Then it follows up with deep depression. therapy may not be a bad thing for me. I have alot balled up inside and this diease does not help. I long for the days when I can feel normal again. Maybe one day that will happen. Right now it is fatigue, joint pain and insomina (BAD!!!). I really appreciate the conversation with everyone on this site. It gives me something positive to look forward to.

Hi Brent,

It really does cause the worst depression, like being covered with a blanket that you can't get out from under and the shakiness and anxiety is the worst, then one day it started to lift as quickly as it had come on.

They put me on Vitmin D as my levels were very low, this can contribute to the joint pain I think. I have read that fatigue and malaise are the last symptoms to go. I still have tiredness if I overdo but I am much better and it will happen for you too. I was dignosed in October, but had a flu/virus in June/ July that probably left me vulnerable to it. 

Best of luck to you and you are not alone in this. Thank God for the forum.

Thank you for your encouragement . I will pray that everyone on this site will get well soon .

Hi Brent,

It really is totally understandable why you're feeling this way, it's a terrible trauma to go through as Natalie and Mono say, so don't beat yourself up about feeling that way, anyone would feel that way (I know I did!), but there definitely is hope and there is recovery, it's draining and you're exhausted physically, mentally and emotionally.

I know that awful feeling of just thinking that this is the best it will get and having to adapt to a new, lesser lifestyle. But it's not the case Brent - there IS still recovery ahead for you, and a full recovery too where you can lead a normal and happy life again. I fully believe that, and that fact you have been asking God to help is important, He will see you through and knows more than all the doctors put together!! I felt exactly the same and thought I would never recovery, but it did happen and it's just so frustrating that for many it takes such a long time - but you won't ever have to go through another spell like the early days of the virus and even now - your body resilience will come back again, it really will!! Hang in there Brent, it's not easy now but all this is temporary.

If you're not already taking vitamins / herbs, would definitely recommend a good strong multi-vitamin per day, high doses of Vitamin C (1000mg-3000mg per day), B complex each day and Co-enzyme Q10 are great for energy, and siberian ginseng and turmeric for immune system and inflammation. These can your system get stronger and start to kick the virus out for good.

Thinking about you and remember there is hope today and there is a full recovery ahead for you Brent, Natalie and Mono. Thinking of you and hoping for a settled day today.

Craig