Mono (glandular fever), guilt, and desperation

I'm doing well! I'm on a phased return to work for four weeks now (up to three or four 6-hour days per week!) but today I called in sick. I'm typically about 70% of my normal self with a bad couple of days every month or so. I'm not back at the gym yet and I need a lot of rest. Being at work is great - human interaction!

It's all still a challenge, but the crippling weakness and nausea are mostly gone.

I hope everyone is doing better or that you're at least closer to the end of this awful bug.

Hi Sarah,

I am about the same as you, I have a few days a month that are low energy and just not feeling well, but nausea is gone for the most part and weakness is gone too. I wish my old energy would come back, but I am greatful for the progress I have, my daughter is still struggling with the nausea and weak/tired feelings.

Hey Mono / Sarah,

Great to hear there is progress there - don't worry too much about energy levels not being their old self yet, that is normal in the recovery process and gradually over time your body builds its resilience back up, until one day you realise - hang on I just feel normal again!

Remember your body has been through such a battering, it takes time to build its full strength and confidence again, but every day that's getting better and recovery is happening and well underway!

Thinking of you both and hang in there!

Craig

How long does the recovery phase take? I only made it to the office two half days this past week and I'm feeling pretty crummy generally. It's scary to be feeling worse than I did a few weeks ago. I don't think I could take another round in the ring with this bug. 😰

Hi Sarah,

I was sick for 6.5 months and have felt better the last 2.5 months, I had a virus and felt nausea and malasie the last two days, I think if you get a bug it will take you down a bit. I feel scared too when I have that mono feeling but I just have to remember that prior to mono I would not have thought twice about having a few days with a bug, mono/Epstein Barr is such a vicious virus and leaves a lasting impression. 

How long have you been in the reocvery phase?

We're on the same schedule. Sick since early November, better since around the second week of May. The last two weeks have been hard, though. One morning this week when I went to work my legs were shaking. Déjà vu.

I had to stay home on Friday, i was at work Wednesday and started feeling weak and shakey, my mom and daughter had a virus in the last week, so I am hoping it is just that.

Still feeling crummy. Too sick to work and very VERY frustrated.

When will this end? I'm so fed up with the unpredictability and the horrible exhaustion and queasiness.

Hi Sarah,

I wish I knew, I have been feeling better and the exhaustion has lifted, been feeling a little crummy the past few days,  My daughter is feeling terrible, she has been sick since November and she got a virus last week so that has set her back. Her symptoms have not really let up during this time. I sure hope we all start feeling better soon. Were you exposed to a virus when you started feeling crummy? I wonder if getting a mini relapse is normal as we resume more normal activities?

Hey Sarah,

So frustrating I know, there is an utter end to this sickness though, hold onto that belief because the end will be full health again, just seems to be so different for everyone how it affects them and how long it takes. I do fully believe you're much closer than you think though, and that you have already weathered BY FAR the worst of this and that better times are on their way - remember with this virus improvement can come suddenly and very quickly, that's going to happen for you I totally believe, even if it doesn't feel like it now hold onto hope that someone else fully believes it for you, and believes that Jesus will bring healing from this horrible virus in your life.

Hang in there guys, Mono thanks as always for all your words of support despite the hard time you are going through - thank you for taking the time to come on and encourage me and others despite this tough time for you and your daughter (which I believe is going to pass, very soon).

Take care and thinking of you

Craig

Hello

I've been to the countryside a while. I'm ending my 10th month of illness. A few of the symptoms disappeared, but many are still bothering me. Some days I stay in bed a lot, some days I can move around, but still weak and with different symptoms. My chest aches and doctors don't know why. I had a CT, had my lungs checked. Thymus seems to be normal in CT. If I press with lungs inflated, I no longer feel the pain, but if I press after letting the air out, I feel it horribly. So it's not the bone itself, not even the lungs, I guess, there's something underneath that hurts. I had some spots on my head red and inflammed without reason etc etc. It's been a 10 months from hell.

I've spent half of my summer holiday and still no improvement. I doubt I'll be able to start work in september. Or maybe I'll be able to do it with hospital breaks, like the period before the holiday. This thing can destroy somebody's life and career for sure. I'm not sure if everything is mono-related, or maybe it's chronic fatigue.

Your daughter's recent virus reminded me of an idea of mine. I was thinking of staying in cold water and start a fever/cold on purpose, to start the immune response, maybe it can help with recovery. Or maybe the problem is auto-immune and is a bad idea. I'd try anything at this point...

Hi Path,

So sorry to hear things have still been such a struggle, it really is an awful virus and just want to offer hope and because it's went on for so long it doesn't mean it's anything more than just the virus itself and it's post-viral effects (i.e. it doesn't mean anything auto-immune or Chronic Fatigue, even though I know it can feel that way).

It can be normal for this to go on as long as this and still make a full recovery. It took me 10 months really to see a turning point, that was when things started to get better for me, and I was like you at that point struggling for hope and to see any way out. But it can just happen when a massive step forward happens in a short space of time, it seems to go that way with the virus.

So just want to reassure that there IS still hope and let you know that I still FULLY believe you will make a COMPLETE recovery Path, God is the great healer and better than any doctor so just trusting He will bring that. Thinking of you and hang in there - and remember there is hope today.

Craig

Thanks for the encouragement. I'm a bit confused about your recovery, since you say that you struggled for 10 months and prior to this you said 8-9 months and another time you said the first 6 months were the worst and then started to get better.

Does anyone have (or had) numb hands when waking from sleep? I feel that numbness sets in a lot mor quickly than before. If I pun one leg on the other, they go numb in a few minutes, if I rest my elbow on something, the arm goes numb in a few minutes. And even the back when the padding isn't thick enough. I didn't have this problem before the mono. Also, a lot of fasciculations and sore muscles after small efforts.

Hi Sarah,

How have you been feeling?

Hi Mono how are you and your daughter?

Rhonda

Hi Path,

I notice this in the hands usually after waking up, not so much the legs but occasionally the foot. The muscle soreness has gone away in the last month or so, some twitches from time to time usually in the upper arms, this is new in the last month. I hate this virus and am so grateful to everyone for sharing information on their symptoms. It helps to know you are not alone in the battle.

I've heard other people about the twitching, muscle soreness, numbness, weakness, trembling etc. Next week I will have an EMG. I'm curious to see if these symptoms can be seen in a nerve conduction test. It would be something with which you can get leave from work more easily, since most of the sufferers have nothing to show for if their spleen or liver doesn't react. Slightly enlarged lymph nodes and symptoms that nobody can see are not enough for most people to believe, sometimes not even for some of the doctors, they're quick to blame it on anxiety/depression/tiredness.

Hey Path,

I do believe the virus can cause those symptoms for sure, it's hard for me to remember back but I think I had a bit of that going on, definitely muscle soreness for sure. It's so frustrating when you're being told by the doctors everything seems okay but you feel so exhausted and unwell.

It just seems to go through this cycle of recovery for most folk which can take longer for some than others it seems, but that doesn't mean to say you won't recover Path because I still totally and truly believe you will and that all these symptoms will disppear given time - not much help when going through it I know, just deal with one day at a time is all you can do, but remember there is hope and recovery there. Thinking of you.

Craig

Hi Sarah,

How have you been feeling?

Hi Path,

How did your testing come out? Hope all is well.

Still crummy. Mostly want to stay in bed. Work is very difficult, even though I'm only doing about 15 hours per week.  Weak and dizzy and nauseated much of the time. 

I'm very discouraged and afraid of possible CFS. Tired of missing out on everything and of feeling like a drag/burden to the people around me. 

It's been ten months now. When does this go away?! 

Hi Sarah,

I was just wondering the same thing, I had a pretty good two months and work was going well, then a minor relapse of same symptoms, not as intense as before. I am discouraged too, but trying to stay focused on the fact that the immune system knows the virus and will fight for us.

I think the return to work and the stress it causes( not knowing how you will feel day to day) may have something to do with the return of symptoms, I am also at 10 months, felt down this morning but it has started to lift. Do you notice that mornings are hardest? 

,

So sorry you and Mono are having such a difficult time! I trust both of you will gradually get better and better days. I truly know how hard it is to continue to experience the ups and downs on our journey to recovery! It almost seems once we experience the ups, the downs hit us so much harder emotional even though the physical symptoms are less severe. Once we emotionally feel we are making progress and our bodies crash our thoughts bring us much stress. 12 months of this battle for me.

We are going to recover and should not lose hope! We are stronger than we once were!

Hang in there! Mono how is your daughter?

Thank you Sara for your update. Think of you often!

Rhonda

Hi Rhonda,

She is feeling a little better, she still feels tired, achy and has nausea, but a little better. I guess that is all we can hope for. I feel generally better, but last week was a long week and that usually ends with a crash.

I am hoping for full recovery for all of us and soon!

 

Hey Sarah,

So sorry it's been so tough for you lately. I really sympathise as also going through a tough time for different reasons at the moment. My personal experience was that around the 10 month mark I started to see some improvement, but it still took time. It's different for everyone though, I know it's so hard not to get discouraged when you just keep trying and can't see improvement. Hold onto hope Sarah because you're not alone, and this won't go into CFS believe me, you will make a full recovery still, it's just unfortunate for some it takes longer than others, but believeing BY FAR that you have weathered the worst and much better days are ahead.

Take care and thinking of you today.

Craig

How many do end up with CFS? I saw my doc last week. He's been very supportive and has been dealing with my employer etc. He told me some people never recover from EBV. It certainly feels like it's not going away. I wish there were some stats about adult recovery times. 

Hi Sarah,

Me too, it is the unknown that is so hard to face. I am encouraged by the fact that we felt better for awhile and maybe it was just to much to soon as far as work goes, How long did you feel better?

 

Hi Sarah,

I know it's hard not to but if you can try not to think about CFS. I'm not a medical person or anything but from the knowledge I've gathered, it is my belief that the VAST MAJORITY of people recover from EBV, even after a prolonged period when it feels like it will never happen.

I'm not sure of the progression of CFS but I don't want you to worry, and there's probably just as much chance of that happening from any virus, I think the reason people focus on it so much with EBV is because of the length of time of the illness.

Thinking about you still and it's hard just to try to stay in the present and not get discouraged I know. I really empathise Sarah and went through the same emotions too. Thinking about you and I still FULLY believe you will make a complete recovery from this virus, without any doubt whatsoever, and even if you are finding it hard to believe just now take some heart that others believe it for you (because I was the same couldn't see it for myself but it gave me some hope when others believed).

Hang in there....things will get better, just hoping it can be sooner than later.

Craig

 

I've felt better for about three months, but I still have one or two days per week in bed, and lots of rest the other days. The aches and nausea come and go. It's so discouraging: I was an athlete and now I can barely handle 15 hours per week sitting at a desk. 

Hi Sarah,

I understand, I felt ok last week and then on Friday had a headache and have been resting since, someday's I feel almost normal and then the lack of appetite, nausea comes back and I feel discouraged again. I have a doctors appt. in September. Does your doctor run the Epstein Barr panel again or is it pointless.

Sara your progress seems normal to me. I fully understand we are all despite to see steady uninterrupted or quicker progress. The main cord ofblood response to recovery articles by those who have fully made the recovery journey say it is gradual and interrupted with set backs.

Please believe you will get over this! I remember when I could not sit up at all. I still have to lay in bed and rest many times a day.

If driving I stop lay the seat back and will rest. We can't speed the process! Nor help what our bodies do but we can and must believe we will be well again!

Please don't even entertain the thought that you will not get over this!

Prayers, Rhonda

This came on the heels of another illness for me, so I've been sick a total of 20 months. I've got eight months until my wedding, so I need to kick some EBV ass immediately.  I wish there were something we could do to speed it up, or at least predict when it will end. The not knowing is brutal. 

My doc hasn't repeated the tests, he says there's no point. 

Congratuations Sarah, How wonderful to have something to look forward to, you will kick this thing for good eventually.

Did your doctor give time frames? mine just basically has a wait and see attitude, rest ,fluids, ect. I agree that it is brutal. I always feel better in the evenings for some reason.

Where did you find the recovery stories?

Hi mono and Sarah, 

I'm 40, and this is month 9 for me.

yes mono, I have tended to feel better in evenings, although I'm having a good two/three weeks right now, just got back from holiday which helped me greatly. I'm having a few'dips' now and then, but I am recovering quicker.

i am reading your comments agreeing to what you say. I had a headache this morning, I get nausea and it's definately the not knowing when this will be gone doesn't help. My gp said, look back from where I've come..... Might be easier than looking forward, look how far I've come. And I can see improvement, even if your improvement is small you are getting there. Because it's slow it's hard to see, but as Craig says we will definately make a full recovery, i just stop and rest when my body tells me enough is enough.

ive spoken to quite a few people I know and the majority had it for a year , give or take, and are all perfectly OK now.

thinking of you all.

caroline xxx 

 

Hi Caroline,

Thank you, yes we have come along way, I need to be better about just resting and taking care rather than trying to jump back in, it is just so tempting when feeling better, I am also recovering from the dips quicker.

Thank you for the encouragement it helps to know I am not alone in this recovery process.

Hi mono,

that at is brilliant news, those dips I experience now would have sent me back to bed for days so when it passes quickly I'm just so happy.

i know, is tempting to just be normal and do things, I'm no where near excercising or working yet but feeling so much better....

good times ahead🙏🏼😊

Caroline, it is so encouraging tp know you have spoken with others with lengthy recovery times who are perfectly ok

Craig is great to keep us assured of recovery also.

Thanks for sharing that information. I need and seek out encouraging recovery stories!

Rhonda

Hi Rhonda,

Where did you find the best recovery stories?

Thinking of everyone still too....reading all your messages still and still in my thoughts every day, don't want anyone to think they're on their own with this because everyone here has been or is going through it and it can feel like a lonely place dealing with it mentally and physically I know that for sure. Rhonda is right, dont' even entertain the thought of not recovering because everyone who visits here and reads this is going to make a fully recovery - I do not have any doubts whatsoever about that so just hang in there just now and try not to think too far ahead.

Mono, I think it would be great if there was a national or international charity where people could go to for advice, information and encourgaement about this virus - it is so underestimated and misunderstand by many, even those in the medical world who should have a better knowledge.

Craig

I am in my 13th month. I have experienced everything everyone is going through. I finally am beginning to get some of my mental back. I still have days when I am just worn out. I have had to work most of my illness. I have some of the cfs symptoms, but they seem to be getting better also. Morning time is worse for me and I am still talking meds just to get 6 hours of sleep. It can be very depressing. At one point I thought about committing suicide because I was so sick plus going through a divorce after 19 years of marriage. I keep holding on thinking one day it will get better and it has to a degree. I see improvement. Not 100 % yet, but better. 

Hi Craig,

thanks so much. After doing really well recently, I'm having a 'bed' day today as I'm feeling extremely exhausted, hopefully just a dip and I'll be feeling better tomorrow.?! Still hard though when set backs happen 😕. Information and advice would help I agree. 

Some people would say that at 9months I have post viral fatigue, but I think isn't this just still gf?! Isn't just this the normal length it takes, I don't think mentally that helps, makes you feel you have something more serious which won't go🤔

Hi Caroline,

I agree about the mental aspect. Do you have any other symptoms with your exhaustion? It seems like the symptoms come in a lighter form.

Hi mono, Only an ache in my arms today,  but I have to agree it's a lot lighter now, even though I've spent much of the day in bed! I did so much yesterday, I was on a roll so paying for it today.😕

Hi Caroline,

Me too, we were working on flooring at the house last week and had a bridal shower to go to and then last Friday I had a crash, exhaustion and that shaky weak feeling. I hope this week gets better.

Hi mono,

yeah, very weak and fragile. I seem to be unable to smile and just go glum. I haven't been able to manage an evening out since I got this. I'm improving just like you but I wish it was quicker, I've got stuff to do!! Lol. Maybe also I'm recovering after an abroad holiday too! 

Take heart remember when we were not able to do the things we are now able to do and our symptoms were worse than now! We may be down for a time but we will be back up again!

Rhonda

Hi Caroline,

You sound just like me, it is like a depression/exhaustion and in my case it lifts in the evening and I will feel almost normal. I guess we have faith in the immune system and one day it will kick this virus for good.

H mono,

yes, I suppose it is. I'm glad you can relate and I can share this feeling and you understand exactly what it is. And you caught this roughly the same time as me too. Not much longer I hope x

Hi Caroline,

After 9 months it definitely is still connected with the glandular fever, some people might call it post viral fatigue or whatever but that is not the same as CFS - post viral fatigue just means it's taking time to get over a nasty virus but you will get over it still, or some people might still just say it's the glandular fever (which is the way I looked at it).

Just want to reassure you fully though, it's gonna get better, the intensity and length of relapses now will tail off as time goes on, NO WAY will you have to go through anything as intense or long standing as these first 9 months. And NO WAY is it anything more serious or something you won't recover from, this is par for the course with this virus unfortunately for many but take that as a positive that it is normal and it is equally normal still to make full recovery after this (even though it might not feel that way now). Remember your body has amazing powers of recovery!

Thinking about you and hoping you feel better soon....don't overdo things when feeling this way.

Craig

Thank you Craig,🙏🏼 that's exactly the way I am looking at it too, still glandular fever.  Depression mood has lifted this evening but tired, in bed.

cannot wait for the time when I'm writing on here that it's gone, completely!

your words mean a lot. Always xx

I'm a retired RN. It is quite puzzling to me that after 6 months they want to call it CFS or post viral fatigue when we are experiencing the same symptoms we were experiencing when we were diagnosed with gf/ Epstein Barr virus.

I believe our immune system will totally get the virus under control. The ssymptoms are still that of gf just less severe for me.

Thanks Craig for your great support and encouragement. Thanks Caroline and Mono for yours too!

Prayers, Rhonda

Hi Rhonda,

yes, exactly the same symptoms at the beginning to now, so that is puzzling why they say post viral fatigue only after 6 months?!! 

They shouldn't do that.

im glad yourself and mono and myself included, are recovering quicker, just shows you we are getting there!

 Xx

Did you encounter many patients with Epstein Barr when you were a nurse? 

Not that I was aware of. I worked cardiac. There is so little known about it. The most knowledgeable seems to be research hematologist.

Rhonda

Hi Brent,

there is no way I could work during my illness, so for you to have managed to work through this and go through a divorce is immense. You are definately stronger than you think, it's probably why you are in month 13, It's obviously just taking that bit longer for you with working and worries etc. Not only can't I work but I have family doing everything for me!

Month 9 for me and doing better but still have 'bed' days, aching, weakness, etc.

you are stronger than you know.

caroline x

Just want everyone to know that their words mean a lot to me at this time as still been struggling myself with awful back pain and finding it hard to cope. I know I shouldn't use this forum for my moans about this, but I just know everyone here is of good will and knows what it's like to go through such a hard and debilitating time, so just want everyone to know I'm thinking about them also and appreciate their kinds words for me.

Rhonda, your prayers are so gratefully received and thank you for praying for us always. prayers for everyone here too also. I still believe everyone here will pull through and be in full health again and be able to rejoice and thank God for that grace, mercy and joy.

Thinking of you all and hoping today can be a good day.

Craig

Oh no, back pain is the worst. My fiancée has that problem and I sometimes can't find him in the house because he's lying flat on the floor somewhere. I'm sure you've tried all the usual: heat, ice, torso belt, drugs... have you got a good physical therapist? 

Hi Brent,

Yes, the mornings are the worst. I am glad you are feeling a little better, Do you start feeling better in the evening? I do, very strange.

If we can make it through this we can make it through anything. All the best to you.

 

Yes, I feel better in the afternoon. It is strange, I feel like crap every morning when I get up and by the afternoon I feel somewhat better. Then I have problems trying to go to sleep. I have to take meds just to get 5 to 6 hours. When I wake sometimes I feel ok, other times I feel like I didn't sleep at all. I have been having vision problems also. I have all the characteristics of cfs. My advice to everyone on this site. REST!!! I was always tough and hard working, but this has almost destroyed me. I thought I could tough it out, but now I feel so broken. Craig, if you read this I hope your back gets better. To everyone on this site, thanks for your support. If I had not found this site, I don't know if I would have made it this long. No one else understands. Not even my doctor. He has told me the past 12 months that I would be ok, it takes time. Couple of weeks ago he told me that he is glad that I accepted the fact I have cfs. I don't know what to do anymore.

Hi Brent,

I am not sure about CFS, they say EBV is detectable in saliva for 18 months so it seems logical that we still have it to a degree and maybe it is just taking our immune system longer to get a hold on the virus or perhaps this is a new strain of the virus? a little stronger maybe. 

I think that it is a good sign that we are feeling somewhat better, I like to think that it is our immune system battling back from the virus,

When I have good days or in the evening I feel like my old self with a little less energy, the mornings not so much with the low energy, depressed mood and sometimes the nausea.

It is unbelievable that we all seem to feel much much worse in the morning. I too struggle in the morning. It feels like I have not slept at all. I am half awake, cannot think clearly, feel almost like on drugs... then towards the evening that feeling lifts and i have much more energy in the evening. I am sure it has something to do with adrenal fatigue from body fighting the virus...

It is making me so depressed and powerless

I totally agree with you mono..... Just completely agree.

i get the low energy, depressed mood and nausea.

we are all feeling the same, still having these same symptoms, just a bit less intense and not quite so often with bigger good gaps, we can't all be getting CFS.

brent, I'm not surprised it's taking you longer, obviously with hind sight you would have done less and taken it more easy....I can't believe you managed to carry on, seriously you're stronger than you think and you can recover and beat this. But whether they call it gf or now CFS you will get better, I suppose by taking it easy.

Maybe changing doctors might help too?!?

Thank you Sarah, your kind words and supportive words are greatly appreciated. Yes have been trying everything for my back! It's been a nightmare. Hopefully things will improve soon, like it will for everyone on the site here. Thinking of you too - remember to hang in there.

Craig

I agree Mono / Caroline / Natalia....I think with this virus and with lots of kind of illnesses that affect your mood the morning and day times can be particularly bad. I've always found that, getting through a day is an achievement when struggling so remember that and not to be too hard on yourself if you're not able to manage the things that you normally would.

Sending hugs and thoughts to everyone.

Craig

Brent , I have been reading through these post and replying to the ones I can relate to. I going through what you did and was wondering how it turned out for you are you okay now ? I’m 8 months into this horrible virus and my wife is leaving me. She just can’t understand how someone could be sick this long and said I take any more of this. In the long run things will work for the better I hope. 

Best wishes Dave. 

Hi David,

i am so so sorry to hear that your wife is leaving you, that must be terribly upsetting, I really hope you have some family or good friends that you can rely on. 

i am 19/20 months in with this horrible nasty virus. Year one was difficult. Year two is much much better, hang on in there as it does keep he getting better. I still can get slightly exhausted and have small tired episodes but I am looking forward still to year three!! Being fully better.

David stay on the forum, I find it helps a lot. People on here know what it's like to have mono/ glandular fever. I hope Brent replies to you.

caroline x

Dave, I'm so sorry. There are many people on Facebook support groups for both mono and ME/CFS. Talking to others who know exactly what it's like to be sick for so long really helps. There are many who have lost relationships to this horrible disease.

Sending you lots of hugs.

Hi Dave,

Oh definitely agreeing with Caroline that in my experience Year 2 is SO much more liberating than Year 1 in terms of the physical and mental symptoms of this virus, God willing you won't have to go through anything like that again.

I'm so sorry to hear about the family issues, Caroline is right please do keep on the forum and I hope and pray that good people can surround you and offer help and support at this time. Thinking about you and remember things won't always be this way. Brent is a good guy to talk to as I know he went through similar personal issues too at the same time as the virus, hoping he can pick up the message and offer some words of advice / support.

Thinking about you and do keep in touch and remember you have some friends here, even though I know we can't do much through the forum, just knowing others are out there and understand and that there is hope and recovery from this virus is something to hold onto at this time. Praying for things to get better Dave.

Craig