Mono (glandular fever), guilt, and desperation

Hi Sarah,

Just want to offer a bit of encouragement and hope that it is still normal to feel that way after that length of time, it still took me a few months after that to see a major turning point but without any doubt the months you have been through up to now are the worst and the intensity will get less and there WILL be a real turning point for you soon and YOU will make a full recovery I really believe - take it from me who was frightened and scared and feeling terrible and wondering if I would ever recover, but your body eventually does get on top of it (thanks to God's healing!).

Personally, I and I think most people on this site who know better disregard the views of those doctors and websites that say that mono lasts 21 days or 4-6 weeks or even 6-8 weeks. I know it's hard not to worry about work, but the main thing is recovery and getting yourself well and you are definitely doing the right thing taking the time - your body needs rest at this time and even when you do go back do it on a phased return, taking the time out now will help in the long run that was my experience for sure!!

Thinking of you Sarah and remember there is hope today and you are through the worst of this, but don't panic if it still takes a bit of time that is normal and you will get there without any doubt.

Take care and message any time

Craig

 

Hi Sarah,

I truly can say I know how it is to have better days and then feel like I have lost the progress I had made. My 4th month I had such pain, loss of appetite, weight loss and weaknesses. Am now able to eat and am gaining weight.Thanks be to God!

I too know what you mean when you say everything hurts.

I am finding the pain is getting a bit less severe and occurs a bit less frequent.

I am praying for you. Jesus has given me strength, help and comfort.

I keep what Craig says in mind. Knowing he has been through this and now is recovered.

You are welcome to message me anytime.

Rhonda

It's really hard to stay positive. I'm terrified of having CFS or fibro. I'm totally dependant on my boyfriend and I'm desperate for a fix. People on this site have had it a heck of a lot longer than I have, and I don't know how you've all coped. I'd trade my house for a cure.

Getting sick of people telling me I probably just need to get out more or get some exercise...

Sarah,

My husband and I are in our 60's and I told him I would give everything we have and start over for my health. So I understand what you saying.

People who are not experiencing the symptoms for a lengthy time are totally

Clueless to what we are enduring!

Well meaning people offering advice is often so hurtful.

I read Sophie's post. It encouraged me. Especially what she said about chronic fatigue.

The emotional impact of this is as difficult as the physical if not more so!

Rhonda

Rhonda

I am at the end of my fifth month, I feel better somedays and then it hits me again. This forum has been a lifeline. They told me that mono had cleared my system after six weeks, then they tested me for Epstein Barr and I have high titers for that and they think I am heading into recovery phase( hopefully) I hang onto Craigs words of wisdom and the others who post here.

Hi Mono / Rhonda / Sarah,

Really feel and empathise with all the words you have written, they are so true. You are right mono the doctors tell you 4-6 weeks or 6-8 weeks and you will be fine, then you start to worry why you are not recovering in that timescale if that's supposed to be the case - don't worry because it is normal still to feel this way after the length of time you've had it and still make a full and complete recovery - that will happen!

Sarah, I am totally against the view of doctors who are a few months of this illness say to people that it's Chronic Fatigue or whatever - the reality in my view is that for the vast majority of people that is NOT the case, the virus and post-viral effects take a lot longer to recover from than the doctors normally tell you but it DOES NOT IN ANY WAY mean you have Chronic Fatigue, it just means your body is still recovering and it will make a full recovery. Maybe for a very small percentage of people they can develop other things like Chronic Fatigue, but that can be the case for any virus even a normal flu or whatever - so don't worry about this I do believe you will make a full recovery without any doubt in my mind.

Thanks so much for your words Rhonda, these are the most important of all in my view that Jesus is the great healer and that He will heal everyone who finds their way to this website and reads the posts from glandular fever / mono - that includes everyone reading this right now!

Thinking of you all and hang in there - better times on their way!

Craig

Hi Sarah,

The people giving that advise have never had this illness, I could have never imagined feeling like this, it is awful.

 I know it is hard to keep resting, but in the last week I have had better days with a day or two of not so great days. I think that the worry about if you will recover is the hardest aspect, but as Craig says we will recover eventually and I can see it getting better, my appetite is starting to come back a bit after months of nausea/no appetite.

Reach out at anytime for encouragement or questions. All the best to you.

Thanks for the encouraging words Mono and for taking the time to help others even though you've not been feeling great yourself. Remember hang in there and I do really and truly believe you will make a complete and total recovery, hard to see when going through it I know but it is going to happen and recovery is happening right now in Jesus name!

Take care and don't worry about a thing

Craig

Hi Pathtonowhere,

I m also at the six month mark and have weakness in the arms sometimes it comes and goes, fatigue. I do not have tremors although the weakness feels like an internal shakiness. It is a strange illness thats for sure.

Do your muscles sometimes twitch aswell?

By tremors I mean something like fingers or hands start to tremble a bit when kept in some positions. This is worse then tired. If i stretch my fingers wide apart, some start moving laterally.

Also, once every 10-15 days a have 1-3 nights when I feel some kind of neurotoxicity, muscles start twitching, joints ache and I have a feeling of confusion and malaise and start half-dreaming, like..dreaming about things while also being aware I'm in bed and ill.

I used to enjoy photography, going out, listening to music. Now I'm just waiting for it to pass, I don't care about anything and I count the minutes at work.

I have not had trembling more like a weakness. I have had body aches for sure and malaise, for awhile I had anxiety, very strange have never had that before and tightness in the neck.

. I am in the same boat, it seems to take away all drive and ambition, I also count the minutes when I am in the office, I am able to work from home too, so I am lucky in that respect. I am not as exhausted as I was in the begining but the malaise is awful almost like a depression and I never had these symptoms before mono/EBV

 

How do you guys go to work? That must take incredible strength of will. I feel like I'll faint or vomit if I'm off the couch for more than about an hour. It sounds like torture to put career before health, but I understand that not everyone has the job security required for a long absence.

Am I the only one 90% housebound for almost five months?

Got groceries this morning. It's the most I've moved in at least a week.

Hi Sarah,

I am able to go in a max of three hours and not often maybe once or twice a week, other than that it is working from home.

I am mostly at home too. Grocery shopping is always a challenge, it takes all my energy. I hope for recovery everyday, just the last week my nausea seems better and am able to eat a litle more, evenings are always better for me and mornings and early afternoon the worst. At almost five months I was feeling awful, just the last week I have felt a little better, not myself for sure,but I will take any small sign of encouragment.

 

I don't know how you do it. I'm nowhere near even working from home. The weakness is both physical and mental, can't focus.

Congrats for being able to get to the office for a few hours! I don't wish this on anyone, but I like to hear of others who are getting through it.

Hi Sarah,

I felt that way for a long while and was happy to find this forum and to be able to discuss this with others, the doctors and others do not understand how sick this makes you feel as well as the anxiety that it causes.

I am hoping you start to notice a difference soon, it wil be very subtle and as I said it is the end of the fifth month for me and not having as much nausea helps.

I am able to work, although with great difficulty, it gives me an even greater feeling of malaise and sickness. My weakness is not extreme, only moderate (I can function at 50% capacity phisically), but the malaise is.

It all seems to be neurological. I hope I get through this without any neuro problems left, since my hands seem to be pretty twitchy and funny.

My short term memory is also reduced by about 50% and I also misplace words and find it hard to express myself as coherently as before at times. 

Hi Sarah and Pathtonowhere,

I forgot to mention that my vitamin D levels were  low, the doctor put me on D3 supplements, not sure if this had any effect but thought I would mention it. It does seem to have a neurolgical effect for sure. 

When I got the blood tests back for EBV, I was able to understand why I feel the way I do, otherwiase I would think I was losing my mind!

 

I also had low D, now on supplements. I wonder if low D is an effect of having mono, or if D deficiency makes us more susceptible to mono. Or neither.

I didn't feel any supplement to work. They were useless or worsening for me. Supplement industry gives a lot of money to twist and turn facts and make people think they need them. Low D may be a coincidence or common among all population or maybe the range of normal D is larger than believed. I doubt low D plays a role in this illness. I myself took a lot of high dosage D for 2 months and got into hypercalcemia and my EKG showed signs of it. If you eat normally and expose yourself to a little sun I believe that the body is the most advantaged. Supplements may overload the body and the nervous system.

Hi Pathtonowhere,

I am doing the supplements for two months only, I am in a very cold and foggy climate.

How high was your dose of vitamin D?

I know that mono/EBV is the cause of all this, but would love to have my

life as I knew it back.

Thank you for the support.

  

I took 4000 IU once a day. I believe these things about the body's necessity of minerals/vitamins and the ways to aquire them are not completely understood yet. Statistics from large scale studies are not really optimistic about the usage of supplements, only very few work and even those just for some minority of people and some special circumstances. For the rest of people is either useless or harmful. At first I also tried everything possible, then when I saw the nonexistent (and sometimes mildly harmful) effects on me and the studies results, I stopped taking them.

Human body is very complex and still quite hard for people (even scientists) to understand in these situations of systemic failure and the best bet is to eat as healthy as possible (without extremes) and rest. There ar some other more simple and clear conditions when certain medicine works, but I don't see the case here. Time passing is the best bet when it comes to this. Trying not to strain the body is essential I guess, since I (and opthers) had a pretty nasty relapse after over-exerting myself when I thought I was ready for it and I wasn't.

Hi Path,

So sorry to hear about this awful time you've had with glandular fever, I really do sympathise having been through a similarly terrible time with it a decade ago. Just want to offer some hope and encouragement that what you're experiencing is very real and normal for glandular fever (despite what the doctors say) and you will make a full recovery, even though it's been going on for a number of months.

Everyone's recovery time is different and it works different on everyone, but the first 6 months are definitely the worst and I don't believe you will have to experience anything of that intensity again. For me it was around 9-10 months when I noticed a real turning point, so if it doesn't come right away don't panic it definitely will come and you will make a full and complete recovery (I thought it was never going to happen but thanks to God it did).

In terms of vitamins, again I'm no expert but things that I have found useful are a good strong multi-vitamin, B complex and co-enzyme Q10 for energy levels and tiredness, Vitamin C in high doses (1000mg-3000mg per day), and an immune boosting herb like oregano or siberian ginseng.

The malaise does disappear and your body resilience does recover, even though it doesn't feel like it at the time. Be careful not to try and push through too much with work, as Sarah says it can be so hard to try anything like that as your body is so fragile when going through it, I would definitely recommend as much rest and removal of stress as much as possible - because working too much or too much stress definitely can delay the recovery process - your body needs plenty of TLC at this time!!

But remember there IS hope and Path, Sarah, Mono, you WILL make a full and complete recovery I truly believe that, even if it doesn't feel like it now, recovery is happening right now and will come.

Take care and thinking of you

Craig

Hi Craig and Pathtonowhere,

Thank you for the reminder, I had to go to work yesterday and am feeling tired, worn out and had a few heart palpatations yesterday. I am going to ret and take it easy.

Thank you for the encouragement. How did you feel at six months Craig? were you just starting to recover? I know you said about eight months to start feeling yourself. Just feeling a little down today.

Have you lost weight too? I was 82Kg before the initial infection, 5 months ago, now I'm 66Kg (I was 64Kg at my worst, 2 months ago) and stabilized at this level for 1-2 months.

Hi Pathtonowhere,

Yes I lost 15 pounds total over the last six months, have gained back two this month. I am so tired of feeling ok one day and terrible the next.

Were you feeling terrible every day at first? Are the good days something new?

Yes, it is new to have some good days, I always feel better in the evening for some reason. I have felt terrible everyday since the end of last October.

 

Hi Sarah, Mono and Path,

It's so good to read post from all of you!

It just seems to help us as we experience similar symptoms and recovery to know others do indeed understand!

I read the post to my husband because I feel that hearing them somehow helps validated the things I've tried to explain that I'm experiencing. Of course the scales validate the weight loss.

Praying for comfort, strength, healing, peace and help from God for all!

Thanks!

Rhonda

Hi Rhonda,

It is comforting to know there are others out there, I had no idea that this could make a person feel so bad. I had an active life, busy job, walked my dogs every day, now I feel lucky to get to the store and a few hours of work twice a week. I only had an cold maybe once a year.

I like to tell people that it is like having the flu for months on end.

I would not have been able to understand it either had I not experienced it.

 

Hi Mono,

It's understandable to have those down days and days where you just can't comprehend why you don't seem to be making any progress - it's normal let me totally reassure you of that.

After about six months I would say I felt like i had made some minimal progress but nowhere near where I wanted to be and nowhere near where I felt like myself - I was just trying to deal with it as best as I could and just hoping still that something but going to change but very frightened because I didn't know what lay ahead. The road ahead from there is a better one though, without any doubt, it still takes still and there can be mini relapses along the way - but if that happens, it doesn't mean you're back to square one, in fact it it all helping your body to make a full recovery. Hoping you're feeling a bit better today.

Rhonda I really empathise with your words from my own experience too - God will definitely help and there is no doubt in my mind that you will make a complete and full recovery - same for Mono and same for Paths and everyone on the site!!

Hang in there and thinking of you all

Craig

Hi Craig,

Thank you so much for your response. You are right about the fear, I just want to feel like myself and not being able to escape the feeling of illness is very frustrating. Hoping for better days ahead.