Mono (glandular fever), guilt, and desperation

I'm so sorry that you have to work while feeling like this. You must be one tough cookie. Try not to worry too much about the inspection. Worry just saps energy without contributing anything positive to performance. You'll do the best that you're able under the circumstances, and it'll be over by the weekend.

Thanks for your encouragement. I work as a teacher, which is especially tiring. I've been in the hospital 3 times during these 6 months, (1-2 weeks of hospital and 1-2 weeks of home leave each time) but it isn't enough, it seems that I would need a few months to get enough rest.  I'll have a very long holiday in 2 months, that's my only hope for a more serious recovery. I only go to hospital when I lose it completely and cannot cope at all because the blood tests are ok, so doctors would be a bit skeptic if I asked for a medical leave just on the basis of feeling ill. They're pretty dismissive, since the problems aren't in plain view but felt by me only. But when I am on the brink of colapsing I go to hospital and my "performance" there is more believable. If I just walk in there and talk normally and explain, they will be like.."ok, you'll get over it, just take it a bit easier, that's all, eat (insert different views here, since each doctor says different: fruit, vegetables, a lot of meat, eat a lot, eat not much etc) and get fresh air" and they don't give me a leave.

Hi Path,

Hve them test you for Epstein Barr virus, my mono is gone but I was positve for Epstein Barr and the doctor said they would write me of work based on that.

I have started having greeen tea daily and am feeling a bit better, but like you I have those days where the weakness and shakiness takes over and makes me feel awful.

Hi Path, you are right that the symptoms are not visible and are felt by the individual only so others think they must not be real or as severe as we say.

I am amazed that you can work and deal with all the physical and emotional aspects of GF.

Keeping you in my thoughts and prayers!

Rhonda

Hi Rhonda,

Do you test positive for Epstein Barr? or glandular fever/mono? I am so glad my doctor tested for Epstein Barr because they said the mono/glandular fever had cleared my system in December and I went back to doctor because I could not understand why I felt so terrible. and she ran the specific test for Epstein Barr.

Darla

Hi Path,

I also notice that I crash at the end of the week, Saturday is always my worst day.

The problem is that doctors have different opinions, 2 said it was an infection 6 months ago, but 3-4 said it wasn't then but much more in the past and unrelated to my problems. They all said it on the basis of the same test results, taken 2 months after the infection so it's pretty strange.

The results are: IGG: 180.4 U/ml, IGM: 3.0 U/ml.

Some said it couldn't be 6 months ago (2 months before testing) with that IGM.

On the other hand, when it all started I really had an infections, my tonsils were huge and with big white spots, I had a fever and body aches. Although the first symptom, 1-2 days before the tonsils infections, was sudden bursts of back-head pain. (I hadn't had a head ache before, first time in my life).

What were your IGM/IGGs? (by you I mean all of you. In my language we have different pronouns for plural and singular, which is less confusing :D )

Hi Darla, yes I tested positive for Epstein Barr. Thst was in August of 2016. This is the beginning of month nine.

I go for short walks everyday. Some days I can go father than others. I try to take more than one walk each day. I do gentle exercises.

Fatigue, muscle and joint pain continues off and on throughout the day.

Thank God I am recovering. It seems the last 4 weeks this has been manifested more .

My weight is returning to normal.

Food taste and smells good now. My appetite has returned.

Rhonda

Hi Path,

Early antigen 39.3,nuclear antigen 219,EBV ab vca Igg>600, EBV igm 36. I have heard that if the early antigen goes up it could be a reactivation. I have also heard that it could be our bodies inflammatory response to the virus so on bad days I take Advil as it is an anti inflammatory and this is also why I have started drinking green tea. My appetite is better and I am feeling a little better this week. In times of weakness I also drink a little of a sports drink like gatorade or powerade.

 

Hi Rhonda,

I have also noticed a return of appetite, this is month six for me. This week has been my best since getting sick, although yesterday I felt very tired as I tried to do to much at the beginning of the week.

Hopefully our bodies are finally getting a grip on this virus.

How long after the initial infections were these results?

Hi Path,

Initial infection in the end of October, had a clear mono spot in December and these results are from mid February.

Good luck with your inspection Path, it's hard to work whilst feeling that way for sure - everything will pass in time and if do consider taking time off if finding it difficult to cope because your body does need rest at this time and to remove as much stress as possible - health comes first although I totally understand it's not easy being in a stressful at times job myself.

Take care and thinking of you

Craig

Rhonda, Mono, Path, Daria - thinking of you all and just a reminder that today is another day in which you move away from this horrible virus and towards recovery - don't panic if it takes a bit of time still because it will come in the end, just do the best to take care of yourself when going through it is the absolute key with the assurance that you will get over it given that recovery time - your body takes a battering with this and needs a while just to get itself on an even keel again, but that time definitely does and will come for each of you!!!

Craig

Hi Path,

Hopefully your inspection went well. How are you feeling today?

 

It went pretty well, but yesterday evening I was left with some body aches, a very weak and trembling hand (I had to carry some stuff around) and ony got 1 hour of sleep the night after.

Now I'm recovering from the effort, still shaky and a bit weak and twitchy. Hope not to get any permanent nerve damage due to not resting. I seem to get better after rest, but never 100% normal, still a bit shaky and weak.

What about you? Are you better?

Hi Path,

I have been feeling better this week, but I had a bit of a crash last night and feeling a bit shaky and weak myself today. I think that is the result of the long week. I also feel better after rest. I am trying to rest as much as possible and hope each week gets better.

When were you first diagnosed? 

I had the initial infection (or the first activation of an infection) at the beginning of October and was diagnosed at the beginning of December.

I've entered my 7th month in April (I thought it was my 6th, but I was wrong).

I'm 1 week away from a 2 week holiday, and then another 7 weeks till a much larger one, hope I cope to catch them both holidays without hospitalisations and emerge over 90% healed after the second one.

Hi Path,

That will help for sure, I always feel better when I have a light week.

I am sorry to hear your were in the hosptial, I was in ER twice but not admitted. I did not have any issues with my spleen, that I was aware of but did have heart palpations.

I had felt my left hand more shaky (plus weak, twitchy, achy and a bit awkward to move) in the past months and now the feeling moved to the right hand. Also the twitching eyelid moved from the left to the right eye, but I don't know if it's related. I also have a muscle soreness on the left hand because of carrying some stuff, but it was relatively light stuff, I would have moved around 3-4 times heavier before the illness and without any soreness and 5-6 times heavier to begin to feel sore the next day. This is just not me. 

That inspection effort seems to have set me back some.

I always look at my thumb-base to see if any muscle wasting, like in MS, but it's nothing, and the MS weakness is much obvious, like losing grip. My weakness is like being capable of 70%-80% (for short actions) as before with 40-50% endurance (soreness/weakness appears sooner)as before, but I feel it this bad because the malaise and twitching and funny feeling make it a lot worse.

Hi Path,

Has the doctor offered any insight? What tests have they run for you? I know they tested me for lupus,negative for that. Thank god. The only thing so far is the Epstein Barr virus, I do believe it just effects everything.

I had MRI, CT, blood tests for some viruses/imune conditions, lyme etc, I don't know all the abbreviations on the test papers.

They said that it's only the Ep Barr (and some even thought that the Ep Barr is too old and unrelated)

I have some kind of flare, maybe not as bad as the past ones, but still bad, following the effort I guess.

I hope this virus ends soon, I know I feel better than I did, but sometimes the symptoms are there in a lighter form, other days I am just knocked out by it usually on the weekends.

 

Just a message of hope and reassurance to everyone that there is an utter end ot this virus...often at the time it feels like it never will especially when it goes on month after month, the mental side of coping with that is just as tough if not tougher than the physical side of it.

But remember it is a nasty virus and it takes your time body to recovery....but your body has marvellous powers or recovery and eventually gets this under control. My advice is to ignore the scare stories that after a certain period of time it means Chronic Fatigue or that you won't get better....my experience in the VAST majority of people is that this is NOT TRUE and that even if it takes a month, 3 months, 6 months, 9 months, 1 year or whatever, most people DO make a FULL AND COMPLETE RECOVERY and get back to a normal and active way of life.

Thinking of you all and fight through rest and sensible living!

Take care

Craig

Did anyone get better at least to 90% of maximum?

I've gained 2kg and I'm no longer afraid that I may end up in hospitat during work, but working is still pretty hard and I still get some symptoms.

Hi Path,

Just to let you know that yes I did, it's more than possible to get back to 99.9% if not 100% !!!

Sometimes you may feel a bit more floored with colds and things but it's childs play compared to what you go through when dealing with glandular fever - that for sure toughens you up!!

It can take time though, it certainly can take a year or two to build up full resilience again, but recovery is happening every day and just be careful about not overworking during recovery.

Hang in there and remember you will fully recover!

Craig

Yes, Craig, I know about you and how you come to encourage other, which not many people do, and that gave me a lot of hope. I was refering to those that came to this thread being ill, I wonder if any of them has already recovered.

Thanks Path, yes I agree it would be marvellous if there were others out there who have a positive recovery story to share to come on, it's important and can really offer a lifeline to those going through the darkest days of the virus.

Craig

Hi Path and Craig,

I have felt better this week, I am hoping I dont have my weekend crash, but so far so good.

It's nice that you feel better, at least by the end of the week.

I've been feeling so-and-so but last night was worse, with palpitations and a bit of breathlessness and body discomfort. I fell asleep at 5 but at least I'm on a 2 week holiday so I can sleep late.

It seems to come in waves. Not that I feel wonderful between the waves either

How did you manage the end of the week?

Are there any others around for feedback? How are you all feeling?

Hi Path, you are so right about symptoms coming in waves! For me if I can rest the wave will pass and I'm settled back to my state of being able to function somewhat.

I am still having some better hours each day. Looking forward to these going into complete days then weeks.then from better ones to good ones to great ones!

One improvement is that I can sleep at night. For months I got very little sleep.

When I am giving thanks I can see I do have some improvement. I am trying to focus on these no matter how small.

Glad to hear you are on a holiday! Hopefully it will be a time to help your body speed it's recovery process!

Rhonda

Hi Path,

Saturday was a low energy day and I felt a litle crummy not not as bad as previous weeks. I have also had the waves of feeling good feeling bad, but I see an improvement.

I am hoping that your vacation helps your healing and that we are all on the road to recovery.

Hi everyone,

Extra sleep is definitely a good thing for your body while going through the virus I would say, that combined with removing as much stress as possible when awake are definitely two key factors. Although I know it's easier said than done because having the virus in itself is a stress, but if you keep in your heart that you know that you will get better and it will all pass over in time then that can help, although I know it's not easy to feel that way when feeling so low and unwell.

Hoping that your holiday is helping with rest Path, yes definitely does seem to come in waves for sure. I'm glad to hear you are sleeping a bit better too Rhonda, even a nap for an hour or two during the day can help or finding a sleeping routine / pattern that works for you. Mono also hoping that the improvement continues to come bit by bit for you, I believe that it will, for everyone!

Hang in there and thinking of you today!

Craig

Like I've already said in a thread that I've mistaken for this one, I'm entering my 8th month and having a nasty relapse. Almost all the usual old symptoms, only a new chest ache, right under the bone. Also I've become not so sharp either, thinking slowly, misplacing words.

Mono, Sarah, Rhonda, how are you doing?

Hi Path,

I have been feeling better and had a long week so yesterday I felt low energy, it does seem to come and go, I had that achy, shaky feeling for a few hours, it is so strange to have good days and not so good days, just part of the virus I guess.

 

Hi Path,

I was just thinking about the fact that you have been working pretty much full time through this illness, my daughter has been working through it also and has had a harder time with recovery and is also in relapse. I think your summer break will bring your healing.

Hi Path,

Remind yourself over and over that this relapse will pass. It is remarkable that you have had the mental and physical ability to work

I am as most others having some good hours and not so good ones each day. Some days more good ones than bad ones.

I just keep repeating when symptoms are

Occurring that I'm ok and they will pass. I rest and try to think on some pleasant or

Happy things. Most pass before too long.

Yesterday I had muscle/joint pain and fatigue. Today has been similar.

Exercise always brings on more intense and frequent symptoms. I did light exercises yesterday.

Thanks for letting us hear from you!

Rhonda

Rhonda, what month of mono are you in? At what % are your symptoms now compared to the first weeks/months?

Path, I'm nearing the end of month 9.

I'd estimate my symptoms to be 70% improved. It is difficult to estimate.

Some are completely or nearly completely gone. Others are less frequent and intense. New ones come and go as I try to resume activities of daily living. I still exexperience tremors, twitches fatigue fairly often.

Rhonda

Does anyone have a feeling of malaise? I cannot really describe it precisely, like there is something toxic inside of you. Like some kind of dizzines without being really dizzy.

Yes to the malaise, I have heard it is the last symptom to go.

I can relate too. It does feel like there is dometjing toxic in you. I can compare it to the time before i was diagnosed with coeliac disease. I have not had stomach symptoms for a long time, which made it extremely difficult to diagnose, but I just felt like I have been poisoned. I got to the point when I was thinking I was going mad and then finally diagnosis came. And it was such a relief.

Many things I experience now seem so similar to that time I had 10 years ago. Which only makes this comparison of the virus to toxin very valid to me. I can actually feel when it is attacking my system more as I always develop new symptom or get recurrence of old ones. And then get maybe one or two days when I 'only' feel broken but not acutely ill. And the depression and brain fog is the same too as with gluten.