Not yet diagnosed properly

HI shabby,

The feeling in your chest, it's just becuz your lymph nodes are inflamed, probably your lungs too, BUT... Don't worry too much... It goes away, I had this feeling til last week... Exactly after 8 weeks I start to feel my chest almost free of that scary tightness!!!

As for your work, I totally understand you... I'm self-employed, I'm losing too much and I can't afford it.

I hope you feel better soon... That's good that you fall asleep, I'm again through insomnia episodes... It's not that good, because if you don't sleep your body doesn't detox the way it's supposed to!

You're not alone, and remember that we will all make it! As everyone else did!

I'm getting to feel slightly better as I've gained a bit of my appetite, my main symptoms after 9 weeks ; fatigue, anxiety, mild nausea and difficulty to fall asleep.

Hi, Nicky thank you for your reply. 

Ahh right, I didn't know that about inflamed lynph nodes. I just feel so exhausted, like I've been awake for 48hours or something, and I go really drowsy. If I stay in bed all day I feel ok, but if I go out or try to do housework it's like being back at square one.

I had a bit of insomnia 4 weeks back which lasted around 3-4weeks, but this last weel I've been sleeping for around 5hours then waking up for an hour or so, then sleeping again.

You've had it 9weeks? I'm on my 8th week now

I know this is going to sound crazy but I find it hard to even sit in a chair. I find I get tired. I feel better if I go and sit in bed with my feet up. 

Hi Shabby,

So sorry to hear you've been feeling so unwell, thinking about you and just want to back up the excellent words of support from Nicky, chest pain and any kind of pain in the armpits or groin or neck are often lymph glands reacting, it's actually your immune system fighting against the virus so in a strange way it's a good thing.

But the most important thing is that these symptoms and this period of feeling awful will definitely pass. The first 8-12 weeks I would say definitely are the worst and once you have got through them, whilst it can still take some time to recover fully, often the intensity of the illness and symptoms die down.

Nicky and Shabby...just want to let you both know take it from me, someone who went through it and had all the same fears and concerns about never getting better and having to adapt to a new lesser way of life - there IS recovery for both of you and you WILL get better, it's just so hard to deal with when going through it that it takes so long and lingers and leaves your body feeling batters. But I have no doubt whatsoever that you will both make a full and complete recovery and be able to look back and say I'm so glad I don't feel like that anymore - you will reach that point, hard to be patient I know, try to stay stress free I know it's hard when there's money and work troubles, but remember your health is more important than those things and you will get by.

Thinking of you and remember there's better, happy and healthy times ahead.

Craig

HI shabby!

Tbh, I had a hard time getting back to the sitting position, now I can sit even more than an hour but then again I fell like I need to lay down, tbh it's getting better!

BUT SOMETIMES YOU JUST NEED TO LAY DOWN WHOLE DAY WHEN YOU DONT FEEL SO GOOD, and that annoys me alot.

Yeah, 16th of November I started feeling like a walking dead, since then I've been through alot, but hey I don't have all the symptoms anymore, just a few that I already mentioned!

Unfortunately I don't sleep well,as a consequence I feel tired and, in the morning, I find it really hard to wake up...today when I was eating my lunch, my arms were shaking lol 😁😁😁

Please don't lose your hopes, remember that you're not alone and that there are people who care about you, and soon you'll be back to your life!

I know that you probably are facing anxiety attacks... Those are toxic, they weaken your immune system, don't stress yourself physically or mentally!

Nicky

HI craig,

I have no doubts about all the things that you say, I do trust you and I feel I'm getting better, even though it's a very lent and slow progress,it gives me hope and stamina!

I hope you're having a good day,

Today I went out walking... Maybe 2 hours or something, went to the grocery, bought some fresh veggies and now I'm back, I don't feel bad, just feeling I need to stay on the bed!

Nicky

Thanks Nicky,

It's so hard not to feel discouraged I know, I get it and understand, it's okay people telling you things will get better and you will get through it, but when you are going through it and having to deal with it, it's the hardest thing and sometimes it just leaves you unsure and just hopng that there will be respite and relief in the end.

I really believe there will be though, hang in there and this will pass over in time, it's just about doing what can to cope to get through each day just now, just concentrate on one day at a time and getting through it and the bigger picture will take care of itself and your health with return again, without any doubt.

Take care and thinking of you

Craig

HI craig! Sorry I had some probs with my Internet connection!

I don't know how to thank you, I wish I had a friend like you around me so I could talk to!

This mono is really annoying me, I know that I'm whining all the time 😢 I just can't help it, I have vertigo back again, and some gi issues... When I was dining I felt like I was about to fall down cuz everything was spinning, it scared me alot... Then my heart palpitations... Severe spleen pain, nausea...whole my body shaking and feeling cold too... My hands are very cold and I feel heavy 😞 I'm scared. Haven't been feeling good lately.

I hope you're doing good!

Nicky

And unfortunately, in the end, tonight I started throwing up again 😢 I don't know if it's even possible to re-gain weight with mononucleosis.

Hi Nicky, I'm sorry you're not feeling good today. I'm the same too. I feel heavy and dizzy. I feel like I've been spinning, it's worse when I'm walking around, I feel a bit better when I'm in bed. Bed is the only place I seem to feel ok.

I hope you get some sleep.I just wanted you to know youre not alone. x

HI shabby, Yeah I totally comprehend you, staying in bed helps alot, but at night I get so scared because of what you mentioned in your message, I think it's the last moment of my life so I don't wanna fall asleep but then I let go and just wake up totally exhausted... I always wake up with so much anxiety and nausea... I was feeling ok foe a few days but then again back to the square one.

I'm gonna get ash. wa. gandha for my anxiety, hope it works. xx

I don't go to doctors anymore, then just tell you to lay down and that there's nothing that they can do. Such a disappointment!

I hope you feel better soon, I'm not a believer but I send you positive energy! Stay strong!

Hi Shabby / Nicky,

So sorry to hear you guys have been having such a rough time this week, it's awful want to let you know I'm thinking of you and still do believe in a total and complete and marvellous recovery for you both from this.

Shabby I really do understand that feeling of deflation after seeing a doctor who is not much help at all, so many of them so little understanding and compassion to people going through this horrible virus. Remember though this phase you are going through just now is the worst you will experience and things can and will get better in time, I know it doesn't help much when going through it but hold onto that hope today because there is definitely plenty of hope. You will get better no matter how bad it feels today, remember that at all times and take it for me who went through a lot of the same feelings and emotions.

Nicky so sorry you're feeling this way too, it's awful I know there's no words to describe how frightening and awful it is to go through. Just want to reassure you also that you will get through it and remember plenty of rest and removal of stress - distraction is a good thing if you can take your mind off even by watching tv or reading or doing something less strenous where you can rest at the same time.

Hang in there guys - it's hard just now but won't always be this way, it really won't and there is FULL recovery for both of you.

Craig

HI Craig,

Thanks for all the positive energy you give away! Today's cold and sunny, I'm so anxious, gonna go to the seaside makes me feel better!!! everyday I'm postponing my plans... I've too much to do but don't have enough stamina.

Have a great day!

Hi Nicky,

Seaside air definitely sounds good, if there are times you are able to get down there for even a brief walk or sit that would be good for sure! But of course it's bracing too and maybe could make you feel tired afterwards, so just be careful about managing your activity - your stamina will definitely return in time I found that it does. It's hard to have to postpone things and when you feel under pressure, but you're doing the right thing to put your health first and not push through, that is definitely the best approach!

Hope you have a better day today and still believing in your recovery!

Craig

HI craig, yes it's been a better day today...

I wanted to ask about something.

Did you ever get a coated or white tongue?

I've noticed since a few days that I've a white tongue beside my red eye (mild).

Thank you!!!

Hi Nicky,

I honestly can't remember if I had a coated or white tongue, you know I feel sure that it is possible though because this virus can cause so many weird and unpleasant symptoms, it certainly sounds like it could be part of it all, certainly in the early part I had a lot of strange symptoms which could be connected to the ear / nose / thorat / mouth from my memory. Would be good to get the thoughts of others on this one too.

Hope you're having a good day today and remember don't worry, things will get better - you're gonna pull through this without any doubt at all in my mind.

Take it easy today and don't put any pressure on yourself

Craig

HI craig,

Yeah I've had a bit of weird symptoms... Never had sore throat, even tho my lymph were swollen, no myalgia (maybe one day and it was so mild), no joint pain... you're right it kicks everyone in a different way...

I'll do my best to stay away from stress, even though I'm awake and already feel the anxiety and a bit of nausea!!! I wanna be normal :'(

THANK YOU!

Nicky,

You will feel normal again, believe me it will happen. I remember feeling so abnormal it was unreal when going through it, like my body was facing all sorts of attack, but you know Nicky you will win the battle you will be strengthened again and find better days than this - let me assure you of that today. Thinking about you today and hope that today can be a more settled today.

In the long term, this will just be a 'dropped stitch in life's tapestry' as they say, but when going through it I know it's so frightening and scary, that will all pass over Nicky it really will.

Craig

HI craig,

Sorry I still got problems with my connection meanwhile I've been through a bit of things, my nausea gets worse at nights, my fatigue is increased and the other night I had persistent vomiting so I went to the hospital, I did the routine blood work... Surprisingly, all the values were back to normal!!! Since my last blood work which was in the beginning of December 2016! My white blood cells counts are normal, so are my red blood cells counts... Though under my normal levels (15,7...I usually have them on 16,8).

Why do I get these symptoms when my blood doesn't show any infection? The fatigue is major these days... I thought it was going away.

Thank you!

Hi Nicky,

So sorry to hear you had to go to the hospital and have been feel so bad, it's so hard to go through all that and it really drains you I know, so remember just give yourself time and space this is a traumatic experience the whole thing but it will get better, trust in that for sure.

After the initial first few weeks of infection, blood tests often always seem to show normal levels again for EBV and blood cells count, etc. It's frustrating I know that because you've been feeling so unwell and at least want to get some kind of explanation from a blood test as to what's causing it. But I can definitely reassure you that despite the frustration it's a good thing that the blood tests are showing normal, the fatigue and symptoms linger long after the blood tests show normal from my own personal experience.

Like the blood test results though, your body returns to normal (in time) too, just wish it was quicker! You did the right thing by going to see a doctor, because you just don't know sometimes if it's the virus or something else, but it definitely sounds like it's just the lingering and ongoing effects of glandular fever - hang in there Nicky, things will turn around, there is a turning point and when it comes it's a marvellous feeling.

Thinking of you!

Craig

Thank you so much craig

I hope so... I've become so skinny can't afford more pews... I threw up my lunch today, for no reason.

Thanks alot

What a terrible time you've had Nicky, it won't always be this way I know that isn't much consolation when going through it. Are you taking any vitamins / supplements at the moment?

Craig

HI craig,

Yeah really terrible!

Well I've stopped taking anything as my blood work came normal. So nope, not anymore.

Nicky

Would definitely still recommend taking a good multi-vitamin every day and also B complex, co-enzyme Q10, siberian ginseng, and maybe something like turmeric or flaxseed oil too. The other thing if you feel losing weight is an issue is Amino Acids, or protein shakes something like that. Also a strong dose of Vitamin C each day is good, maybe somewhere between 1mg-3mg.

These will help boost up your immune system during this difficult time, I know these things can be expensive and you might not want to take too many things, but generally it's very safe so long as you don't take too much of anything (always good to check maximum daily dosage limits).

Craig

I guess you're right, I'll take a multivitamin + B complex... I'm not eating well so I definitely need them! I've been eating veggies when I can eat and they don't give me too much fuel you know, but that's how I get my vits and minerals. No appetite and too nauseous.

I tried once to drink my protein shake, but it made me bloat tooooooo much and made me feel sick, I might try it in a couple of days since I've been vomiting too much lately.

Next week, I'm going to visit another doc... I hope they don't find anything scary ) :

Yeah amino acid tablets then the same if not better than protein shake then! But don't worry Nicky, it will all get better in time, it's not easy to comprehend that at the moment I know.

It's hard having always to go and see doctors, never easy at all and always stressful - you're doing the right thing though just to keep on top of things having them check things.

You WILL get better Nicky my friend, I do believe that - and don't panic if things don't come right away - sometimes that's the case but it definitely will come and you won't have to go through this forever, there is another side when your body and mind and everything is recovered and feels free again - something to look forward to (I know it might seem a long way away now, but trust me it will happen).

Craig

Then,I'll get some aminos and start taking them as I need to regain weight, I'm sure a bit of my fatigue is because of malnutrition and negative thoughts!

I just need to be more calm, it's really hard though, because I often think that I might have another disease too... I hope not!

Thank you ) :

Worth a try anyway Nicky, just want to remind you that this first three months you've been through is always the worst of the virus, so although things might not go perfect right away from here, you hopefully won't have to go through another three months like that. But beware it can still try to linger for a while though, but eventually it goes for good.

Hang in there, you have seen your doctor about it all and that's all you can do, if there was anything else there it is likely they would have picked it up so just put it in the hands of God, you're doing all you can and remember there's hope and recovery today Nicky! I do believe that!

Take care and just give yourself rest and space and time to recover at this time, don't look too far ahead.

Craig

HI craig,

I already ordered my items hopefully soon they'll arrive!

I went to the hospital near me for liver thyroid urine and blood work today!

I already got the results!

Guess what? I've neutropenia again, 1,300 / 2000-7000

That's low... Tomorrow I'm going to my doctor to see what she has to tell me, my overall health is better than 2 months and 3 weeks ago! I can see the improvements that you always talk about, but I'm concerned like always, it's become a normality unfortunately... My doctor was more shocked by my weight loss of 22 pounds.

My digestive enzymes were fine too... I'm sure it's more about having less appetite, not being able to eat more carbs and of course the continuous and persistent anxiety!

Seeing my blood work, I'm certain I'm having a relapse as my last week results were more than fine!

She keeps telling me that mono can't cause you all this but I know that she's wrong, the majority of docs have no clue on this virus, that's a pity!

We're totally understood NOT!

BTW, I ordered l-l ysine, it might help me with more antibodies.

Nicky

Hey Nicky,

It's good you're being monitored at least with blood tests and things, just so sorry to hear you're having such struggles and losing all the weight and feeling this way. Really feeling for you Nicky, I do still believe you'll get better, yes it's wise to listen to the doctor but doesn't mean to say you can't question them on things or understand certain things about your own body better than they do (why do they sometimes do that, it annoys me so much?)

I'm not sure what all the blood test stuff means but I know that my liver test was off for a good while after glandular fever so that can be a normal thing, just make sure they keep an eye on your spleen as that needs to be monitored very carefully if it's enlarged at all.

Just hoping things improve soon Nicky, it really can hit some people hard, the first 3 months are by far the worst and things can and I believe will get better from here - it can still take time though especially with your body taking the battering that it has - doing the right thing to keep in touch with the docs and let them at least do their tests to just keep an eye on everything - you're doing all the right stuff things gonna get better for you Nicky they really will in time.

Take care and hang in there

Craig

HI craig!

I'm feeling better these days, been doing alot, I have more appetite and my nausea is almost gone, hopefully good days are getting closer!

I went for Hiv screening test, and fortunately it was negative!

Hope you're doing good too!

Can't wait to feel like a normal human being!

Niky

Hi Nicky!

That is really good news glad to hear that you have been feeling better, that's progress! Remember though still to be wise and phase in your activities and recovery, because sometimes you can still feel okay and do too much and then have a small setback - so just be wary and don't overdo things too soon, that's important!

You will definitely feel normal again Nicky, I also went for HIV screening when I had glandular fever and it is worrying even just the thought of going through that so what a relief that you can put that worry to bed in your mind, I was also very relieved at that!

Thinking of you and just still believing that healing with come (through the touch of God and Jesus) to make life and things better again!! Hang in there!

Take care and hope progress keeps happening!!!

Craig