Not yet diagnosed properly

Hi Rosie,

Thanks for the words of encouragement and good advice for everyone. I'm hoping that you are doing well and feeling a lot better. It's not easy I know going through the struggles you mention, but as you say things can and will get better for all the folks on here.

Craig

Hi everyone. Thank you for this thread. I started believing again that maybe I have not lost it yet completely... My GP definitely thinks I am hypochondriac... All I am getting is yes, it is nasty, drink plenty of water and it will go away. Christ if it was so easy i would attach myself to a tap!

I am only in the beginning of this thing, 5 th week running and feeling absolutely miserable... Does any of you know when that spleen discomfort/pain goes away? It is slightly better now, I can walk without being sick and can actually sleep without sore left side, but still whenever i do things the pain comes back... It drives me mad...

And anyine had this sore throat coming and going? It is almost as when I think it healed (mind you was horrible to start with, I had ulcers and bleeding from tonsils on top of white spots) it comes back. Not so much white stuff any more. It gets red and swollen and my glands ache like crazy then

Hi Natalie,

Doctors and those who have never experienced Epstein Barr virus/Mono may make you think you are losing it. However, be of good cheer ( if possible at this time) because you are not losing it.

I'm in month 9 am beginning to have more good hours with fewer bad ones each day.

Yes, I still have sore throat that comes and goes. My glands still hurt.

It took quite a while for my spleen and liver area's to feel better. I still have occasional pain in their areas.

Anxiety seems to be a common symptom. So many symptoms and so few answers doesn't help!

Each person is so different. For me recovery it has been a gradual process.

Jesus has been my help and strength.

You will recover. When we set goals for being recovered by it causes more stress and anxiety if it does not happen when we plan for it to.

Even in the darkest times when your body and mind are filled with agony tell yourself that you will recover! Yes it is often a small step forward and a giant step back but it will one day be a giant step forward and a small step back. Don't give up!

Praying for you!

Rhonda

Thanks Craig. Yeah I've made some good progress thanks, though having a minor set back this weekend after having to go for an endoscopy just to check the vomiting wasn't being caused by anything untoward! Have a lymph node that's zoomed up massive after that so I'm resting today and hoping to get back to plodding on towards recovery as I have been over past few weeks :-) it's been really nice to have quite a lot of pain free days but still got to be careful to just do baby steps!

Thanks

Rosie

Thank you for kind words Rhonda.

This thing has completely stopped me in my tracks and I feel so bad because it has impact on my daughter. She is 5 and it is so important for her to be out and about and go to events and just have normal time. Instead she has me unable to do things with her additional sense of guilt which probably doesn't help me to destress just now ...

All I can do is do my best with what I have at the moment.

I started some mindfullness training and will get in touch with counsellor. I am normaly very active and being housebound makes me feel insane.

I am taking supplements Vit B complex, magnesium, vit D, Vit C, zinc, olive leaf and coconut oil. Oh and Manuka honey. Will see if it majes any difference. I am trying to pace myself too... it feels like I have energy supply that lasts only that long (or indeed short) and if I push it I blow the fuse and need to stay in bed 2 days to charge. And the brain which feels lile pudding of a very doubtful quality. I have mental ability of a sloth on sedatives just now.

Apart from fatigue and pain what gets me is this feeling that I lost me during this everything (prior to the tonsillitis and mono I had some very stressful time which probably contributed to this all) and my life just went upside down. It really makes me very low

But knowing that there is people who understand makes it easier. Like you said unless someone been through this it is unlikely that they would understand...

Thank you for your prayers and I hope everyone suffering from this will get better very soon and become a better version of themselves.

Natalie

Hi Natalie,

I am in month six and I am just starting to feel better with a couple of not so good days a week, but it is progress.

I think that doctors unless they have had this virus do not understand how ill you feel and the many different symptoms it causes, I still have scratchy throat from time to time.

The best advise is to rest as much as possible and to know it is a long recovery process and that everyone is different in how they react to the virus, It is a good sign that you are not feeling as sick, but don't push yourself with this virus.

 

Thank you Mono for your reply. Well I am starting week 6 on Wednesday, so mid month 2. It is mind blowing that in month 6 you started recovering. But I am glad you feel better.

How did you manage yourself during this 6 months? Becauee I feel like all I am capable of is to sit on a sofa at best. Some days all I can do is lie in bed doing literally nothing, in this half awake half asleep mode. And in the morning I feel so so so tired, like I have been partying all night long. It is really challenging for me to go for 10 mins walk😨 at this rate I am really worried that my muscles will waste. So I am trying to make myself do something, anything but the next day I canmot get out of bed due to fatigue and sore glands. Should I try and walk a bit or should I just resign myself and wait for progress? But I cannot stay in bed for 6 months or however long it will take me to get better... i am completely lost. How did you manage this? Or any of you?

Hi Natalie,

I am able to work from home, but still have to go to the office a couple of days a week so that was the extent of my exercise, I did finally surrender to the process after relapse, I would over do it and feel just terrible, so I started resting as much as possible and it seems to have helped.

I would wait on the exercise for sure, you will get there. I have spent alot of time at home and it has been challenging. I made myself nap everyday  and just go with how my body was feeling, nap as much as possible, in the beginning you can do little else.

 

Thank you Mono for your response.

The reason I was not replying earlier is because I have come down with realy bad throat again. Not sure if it is mono or not, as I also had Strep throat to go with mono.. i am waiting for swabs report tomorrow as just now nobody knows if I should get antibiotics or not...

I feel like I have razors in my throat started Tyrozets and ibuprofen to ease the pain in my ears, throat and headache. It has kncked me down completely just when I thought I was getting a bit better.

HI Natalie,

I don't think taking drugs such as ibuprofen would be of any good option as they make your liver work more which leads to fatigue.

Instead go natural and it works when you have sore throat!

Make a tea of one inch ginger, one clove of garlic, a tablespoon of unpasteurized ACV and fresh lemon juice, in the end add a tablespoon of raw honey!

Do not take antibiotics while having mononucleosis.

Feel better!

Niky

Hi Nicky

Well I am getting a bit better throat wise. The lozenges helped a lot, so I think I might have had some bacterial flare up. I am still taking them. My swab still is not available...GP forgot to say that on the day I was meant to call them the clinic was closed for training 🙄

For my glands in the neck I followed a very unusual advice (traditional medicine) with a big disbelief but thought what the heck! Can't harm, let's try it... It actually helped🤔 Cabbage leaves (just few) need to be thrown on boiling water for 2 minutes, taken out and softened by pressing them with something heavy and then put on swollen glands and wrapped up with muslin square to keep it warm. I kept it for 5 hours. It actually did the trick to my huge disbelief!

I hope it gets a bit better soon...

HI!

Well that's some good news!!! AND I keep that trick in mind for when my glands are swollen!!

Thank you!

Hi

I am glad I could have been of some assistance sometimes traditional medicines proves its worth when modern has nothing to offer

I started olive leaf too (still drinking shakes with coconut oil) after I read some promising information on its ability to break viruses, including EBV. Today feel really like having flu, all muscles are sore and my glands under armpits are sore. I read that it may happen if olive leaf starts working so fingers crossed! I hope that it doesn't mean I am just getting worse I am still eating manuka honey and garlic and ginger.

I was wondering about something, maybe one of you had some experience. My heterofile test done in 3 week of illness came back negative despite of typical mono symptoms. My doctor shrugged it off as many vituses can cause mono so was not very keen on pursuing it further. I read that if heterofile antibodies come back negative it could be worth checking EBV antibodies. GP won't do it. I found a lab where I can get it done but as it is expensive I wanted to ask around first if anybody had experience where monospot is negative and EBV test comes back positive...

Any insights anybody?

And another thing that seems to happen to me is that my blood pressure (which was always fine) up to crazy readings (170/110) when i try and do thibgs... after a while it spikes up. And settles a bit when I lie down and after a while is ok again... is it a response of my body to something it coniders excessive effort?

Hi Natalie,

Blood pressure has been an issue for me. I had hypertension prior to having EBV.

It was well under control. After EBV it went way up. I had palpitations. Then it went way low. It seems that EBV effects most all of our body systems.

Stress also effects blood pressure! It can even override B/P meds.

You should talk to your physician about your Blood pressure.

Rest and trying to relax helps. It also helps our body to recover.

You will get better. You can't rush recovery. I'm having more and more good hours mixed throughout the day with not so good ones.

Jesus is my constant source of strength to carry on. He helps me, strengthens and upholds me with His righteousness right hand.

In a few months you and your daughter will once again be experiencing much better times. Maybe you could start with a simple game when you feel up to it. Tic-tac-toe was one I often played with my children when either of us was ill.

Keeping you in my thoughts and prayers!

Rhonda

Mine also went up and then went down with rest, it is better now, such a scary feeling. What did your doctor say regarding this?

 

Just to monitor it and let him know next visit to call if I needed something.

Hi Rhonda,

I had the same, my mother has a blood pressure monitor, so I used that, it has gone away though, I had it for a few months, It is so important to just rest with this virus, it is frustrating for sure.

It is so scary!!! It goes through the roof. Ang gives me a lot of panic feelimg when it happens.Like my body just goes into override... Horrible illness this is. I am relieved to know that you had same issue... i got scared and though that my heart started packing in. Funny tjing is that it aleays does it when I feel ill generally. When I am better and I check it the readings are amazing.

I did mention it to GP once already but we were not sure if it was not antibiotic I got put on... but it happened today again... aroud same time of the day too! I will speak to them on Monday. It settled now.

I just feel sometimes like giving up. After this episode with high blood pressure I just melted. And spent another hour crying because I feel so powerless . And I still don't have definite confirmation that it is EBV... my throat seab came back negative. Altough I discussed the swab with a friend who is medical doctor and she said that they are really worthless as most doctors don't take them in a way they should (i.e. sweeping only tonsills, not throat and not touching tongue-my GP did exactly all he should not...) I feel that I am just getting paranoid about it, envisaging all worst things because of GP's careless attitude... it is so hard to believe that it will ever get better. I had my life 7 weeks ago and now I am reduced to nothing. It makes me soooo low that I evem lost mental power to fight this I think...

Thank you for your kind words Rhonda, much appreciated.

Sorry for spelling, was typing quickly and forgot to check. And no option to edit that I can see..

Hi Natalie,

I had all the same symptoms the anxiety is terrible, this feeling is starting to go away now.

You will feel sad and anxious and that your life has been hijacked by this virus. This forum was a god send because the doctors do not seem to know what this feels like and it is good to know others feel the same,  it is a long journey, post anytime with questions or if you are feeling down.

Natalie, while wethe are powerless over what is going on in our bodies we can keep on telling ourselves this will pass!

My heart breaks for you! I well remember being where you are. Thinking I just didn't have the strength physically or mentally to press on. But you do and you will!

You are needed and important! Keep in mind this is going to be a battle emotionally and physically!

Keep encouraging yourself even if you think it is not helping it really is!

Rhonda

Hi Rhonda,

I so agree with you, it is a battle with this virus and you do feel defeated and just when you think you cant take it anymore the symptoms lift and you start to have days or even hours when you feel normal.

Hi Mono,

You are such a good support and source of encouragement for all of us!

Yes, you are so right! I remember in my darkest hours I would have just a minute or two where I felt almost completely normal.

You and Craig have helped us all!

Thanks!

Rhonda

Thank you all very much. I am trying not to show how much this is affecting me to my mum and daughter. They are already so worried . My 5 year old asked my mum if i will ever be healthy again so she can have me back. She thought I did not hear and it just broke my heart.

And every day I feel a bit brighter I hope it will pass and continue to get better and then out of the blue i feel awful again. And when this happens every time i have less power to face it. I am probably going to lose my job over this. And i am my family's only source of income.

But foremost I just feel like a pest when talking to GPs'. They have almost written on their faces: "what? You again? What did you make up this time?". As I was pregnant in the beginning of the year and things went wrong they more often than not blame everything on emotions related to that. And whilst there is a lot of grief in me I know I could handle it if I had my normal life. This virus hit ma at worst possible moment... and it took ages for GPs' to accept that I felt and feel horrible because of something more than traumatic event.

It is all been very hard and i am really grateful that I came across this forum. At least I can vent my frustration to people who understand. Thank you so much.

Hi Natalie,

One of the things I noticed too is that I would feel better and then bad again( it still happens when I have down days) it is just part of this miserable process. I liked to think that the good days or hours are your immune system fighting this thing and eventually it will overpower the virus.

When I first noticed symptoms, I was wondering if perhaps it was stress related, as I had lost my brother and niece within a short time period, mono/Eostein Barr was the last thing on my mind, I was feeling terrible and one day felt so weak I ended up in the emergency room, the nurse came in with a smile on his face and said you have mono, I thought it was funny too at the time having no idea what it would turn into, everything I read said six to eight week recovery. They really should warn people of the various side effects that this virus produces.

Just let your daughter know this just lasts longer than the flu and it is a good time for movie watching and maybe audio books for her if you are not up to reading to her.

If you test positve for Epstein Barr your doctor should be able to write you off work for some weeks. It is a help to be able to rest.

Hi Rhonda,

Thank you. Craig and eveyone on this board really helped me through the darkest of days. 

Hopefully we are all on the mend and can give hope to others just starting the journey.

For some reason I always felt a little better at night, now I am having good days with a day or a few hours of low energy a couple of days a week, but much better than before.

Hi Mono

I know this 6-8 weeks recovery time is a joke. Then again a good friend of mine got better within 3 weeks and forgot about it. She was on Amoxycylin for 2 weeks too as incompetent GP has prescribed her this just after confirming mono by monospot. She had no rash. So different for each patient....

My GP when he finally said that he thought I had mono basically dismissed me by saying 'it is going to make you like someone has switched your charger off'. But then of course he expected me to be fine in 3 weeks time... and evidently there is no recognition of a mental impact it has on you. Not only it gives you anxiety but a sheer debilitating aspect of this makes you depressed. Not to mention that dealing with doctors who a) have no clue b) can't help but think you are crazy is not great too.

I am sorry to hear you had such hard time.. but it makes me re-think something that I had on my mind initially when it started: it is attacking people who had either health issues (my friend got it after pneumonia) or had severe stress (you and me). And a mpnth before the syptoms I had a horrible cold sore twice on my lip that just would not go away without Hascovir gel. It took a month or more to clear it. And they do come on when immune system is low. Same herpes family too. Probably this is why it so difficult to fight it off, as it affects people with low immunity at a time.

With me it is the same. I feel better for a day or two. And them I wake up feeling all broken again, achey, sore and also in really low mood.

Thank you for your response.

I think I will do EBV test. For own peace of mind. So that at least I know where I am with this. I will try to push GP when I see them next week. If not I ll just pay myself.

Hi Natalie,

It is good for peace of mind, my mono test was positve in October and then negative in December, my gp ordered the Epstein barr test( February) and it is good to know if you are active or in recovery phase. I have high titers and will probably be retested at my annual in July, but looks like I am headed to recovery phase. FIngers crossed.

The depression with this is as bad as the illness, I wonder how many people are put on meds for depression when it actually Epstein Barr, you know it is the virus as the depression lifts on the better day( or hours)

 

It seems that stressful events physically and emotionally alway precedes EBV.

I too was very stressed prior to getting this virus. I had a bad sore throat a few months prior.

I think the serenity prayer is on target for what we often need to do. Accept the things we can not change....change the things we can......and the wisdom to know the difference.

We are all doing better and we will all fully recover!

Rhonda

Hi Mono

I completely agree with you. The depression just lifts like a black cloak when you feel better. And I literally regain then all my clarity of mind, motivation and smile. And I see how badly this cloak fims the light, sound and colour. It feels like you have a film on you which prevents you from feeling and seeing world the way it is. And when it lifts for a day, few hours sometimes and sometimes few minutes this is when I realise what it is.

I will definitely try this EBV test. And will try to make him test for CMV as it causes same symptoms.

I am really happy to hear that you are better.

Hi Rhonda,

It is great to see that you are so positive after all this ordeal. Your kind words are very needed. Serenity is definitely called for.

Natalie

Hi Natalie,

It is good to hear you are having good days now and then, this is the first step to feeling better, on the bad days just rest and wait for the good days, I honestly did not think I would ever feel better.

I used to tell my mom it was like someone just threw a blanket of depression over me and as much as you want to make yourself feel better you just cant, not a good feeling when you feel so ill.

Hi everyone

I just popped in to say that I am really unwell i feel like having a nasty flu only without high fever.I went to outpatient yesterday-chest clear. My throat looks better but still hurts (I had one completely pain free day yesterday, it was a bliss, oh how great it felt but had to stip tablets i was taking as only allowed for 5 days..). But overall I just feel like hit by a bus. And on top of that got diarrhea...

I hope everyone else is doing much much better.

Natalie

I get the same feeling, it comes in waves, a few days at a time, sometimes even 1-2 weeks. Now I have some kind of bronchitis too and chest discomfort and pain right under my chest bones.

But that feeling is horrible, like you are drugged or something, the whole body feels strange, shaky, mind foggy.

What month of mono are you in, Nathalie?

Hi Path

I going to be finishing month two soon and no improvement in sight. So much so for 2-3 weeks. I felt just a tiny weeny bit better in terms of fatigue for fee days after 5th week (i could actually sit on a sofa and go for 15 minute walk) but then got slammed with either recurrence of tonsillitis or something viral 10 days ago and felt horrible. Today first day not feeling acutely ill but it sent me right to square one in terms of exhaustion. I am actually more fatigued than I was to start with of it is at all possible. Plus spleen and glands bother me again. And now ears to top it of. Not to mention this drugged up, hazy feeling and low mood

Two steps forward and one back...

I just got back from GP. Another sick line. He won't do EBV test as he says that GP cannot refer for it. Any experience with this?

He also said that I developed Chronic Fatigue. Told me that western medicine is useless in treating it so I should go to herbalist.

I feel so awful and they just washed their hands off.

Hi Natalie,

It is very disappointing when weI get such responses from those we, are seeking help from. It seems they are a bit hasty to label us with chronic fatigue or anxiety disorder.

I feel they are both symptoms of EBV and will eventually fade away unless they were present prior to EBV.

They is no quick fix for this virus. I have had 4 very symptomatic days. It is a real struggle!

I have spent quite a bit on herbs and natural treatments. I really could not tell it helped. There are side effects with most of them too. Be aware dehydration is one side effect. Hopefully you will respond better than I did.

You will recover. It is so difficult not to stress but very important. Rest for the mind and body is important but definitely difficult to obtain.

Rhonda

Hi Rhonda,

Thanks for your advice. I have had taken an olive leaf but happened to feel awful the next day. Maybe I just jaopened to have a bad day, or ot was a coincidence,or maybe the leaf as some people I heard get reaction to it whem it kills the virus off tol quickly for the body to handle it. It felt like really bad flu. A bit scared now to try it again...

I am doing meditation twice daily now, started mindfullness. I contacted the counsellor too to unravel the loss of pregnancy as it is something that still makes me very tearful and maybe it hinders my recovery. I am sure that it was at the source of this everything and undermined my immune system. You are right that peaceful mind is needed to heal.

But it is so frustrating to feel so horrible and not to be able to get any answers.

I am going to get my EBV test done next week in a private lab. At least I will know what i am up to. Just now every day is a mental and physical struggle.

I took a longer route home on a way out from the GP and enjoyed it a lot. 20 minutes of a slow walk and now I am in bed with movies unable to do much but it was worth it. Even if now I feel horrible.

Hi Natalie,

My doctor gave me many tests before running the Epstein Barr virus panel, she was able to do it.

v3 I would not think chronic fatigue, my daughter and I have been fighting it for six+ months and are not thinking this way, as Epstein Barr panel points to recovery, I still have down days. It will be a struggle but you will feel better, your doctor should run the panel as you need time off from work to recover, if these doctors could get this virus they would be alot more sympathetic, luckily my doctor had a long lasting virus( not Epstein Barr )so she was more open to running tests. They could not do anything for me either but it helps mentally to know where you are with the virus, if you are in active phase recovery phase ect. 

I use raw orgainic coconut oil as a mouth rinse and have started with green tea( which seems to have helped) I use a little sports drink if my appetite is dwn and I feel shakey.

Also vitamin D and C.

 

I was taking Vit C1000mg but I got really bad diarrhea with it. I anyway take Vit D (very strong, prescribed by the doctor as I have Vit D deficiency due to celiac disease). Also magnesium and B complex. And I too like coconut oil. As my apetite is not ideal these days I make sure I have a coctail made from bananas, warmed up coconut milk, desiccated coconut, flaked almonds, cocoa, cinammon and I add 2 tablespoons of warm coconut oil to it.

I also use quite a lot of manuka honey, ginger, turmeric and lemon...

So far did not help too much though

Hi Nataile,

Your cocktail sounds great. Try some green tea and see if it helps, my mom recommended it and I hadn't had any luck with anything else, so I figured why not, it may just be the virus running its course but I started feeling better.

Hi Mono

Thinking about it I actually read somewhere that green tea is quite good for fighting EBV so you might be right i am going to up my dosage as I drink it but maybe once a day. How many times you drink it?

Once or twice.

HI Natalie,

I think the most accurate test is the monotest which looks for antibodies of both acute postacute and chronic infection.

I've heard about the great miracles of olive leaf 🍃 too. At the moment I'm on vitD coconut oil, I've started taking sulfur too for det oxing from heavy m etals.

I've stopped taking 8there supplements...

And oh I've had low pressure and as I stand up my head spins around like crazy... My doc says you're sick just in your mind lol

How have you been!? I'm like congested all the time 😀

HI mono / Natalie / rhonda

How are you all doing? I hope you have had some improvements these days.

I think about you all...a very hard journey it is but it will come to an end someday...hopefully soon.

It's been 26 weeks so for, so yeah!

P.s. Contrary to you all I've been struggling with Orthostatic hypotension which makes me act like a dead bug laying on bed for days, although it's been much better these last days!

I'm only taking vit D / M S M / coconut o il for cooking.

Hi Nicky,

I am feeling better overall, still have some down days, my own fault as I try to resume my normal life and overdo it. I am just so glad to have my appetite back. I am glad you are feeling better.

Was the ortostatic hypotension the result of mono? 

HI mono,

Glad to hear that you are doing better, well I'm just like you, sometimes I overdo it too but later at night I feel crappy, though I'm feeling better tbh! My glands aren't that swollen anymore and my throat is not that itchy like before!

I think so, because this has been a part of my journey since the beginning of it all, since mid November, at first it was like constant but now it happens just for a few times a day!

Hopefully this will go away too!

That's so good that you got your appetite back so you can eat well and get all your nutrients from food!!!

Hi Natalie,

I just want to write to let you know I understand how you feel over the doctor saying about Chronic Fatigue Syndrome, this has happened with so many after they just tend to categorise people with mono / GF as having this if they don't feel right within themselves after six months.

I want to reassure you that in the vast majority of cases this is NOT the case, mono is such a horrible virus and it can easily and unfortunatley often does take over six months to even see real signs of notable progress, and that even after being unwell for such a period the overwhelming majority of people do make a full recovery still and do not have Chronic Fatigue or anything like that. It took me about 9-10 months to see a turning point and I feel horrible before that, but that was 10 years ago and the last 9 thanks to God have been generally healthy.

You will make a recovery Natalie, I truly believe that and just hang in there I know it's so hard, but it things will change eventually even though it doesn't feel that way just now.

Take care and thinking of you

Craig

Hi Craig

Thank you for your supportive words. I am full of respect for you for fighting this thing for so long. It is good to hear that you fully recovered and it is amazing that you are here to support people in this ordeal. People like you give hope to people like me that there is a light in the end of the tunnel even if very far...

Natalie

Hi Nicky

I am still very much in the shadows but I am trying to survive this somehow without losing my mind.

I am trying to make myself go out even for 15 minutes. My glands swell up, throat starts aching and spleen aches after but I think it is worth it.

I hope you are getting better and better.

Natalie

HI Natalie,

You're doing good, I surely remember those days when walking around was totally difficult but your body can improve everyday so please go walking everyday. it's really important to maintain muscles tone which helps to cleanse the lymphatic system by contractions which pushes your lymphatic system valves and leads to draining your lymphatic liquid... So 2 litres of clean water if possible!

Stay strong, you can make it as anyone else.

I'm doing OK. thanks!!!

Hi Nicky

Yes that is the test I am trying to enforce on my GP. Failing that I shall get one done myself. I am aware that mono can be caused by few other viruses but GP won't test me and if I have to pay myself it will be in the range of £600 for 4 tests. Not really doable when off sick. But I want at least EBV test done.

I am hesitant as to olive leaf. I think I will try it again in few days staring from low dose and if I feel fine I will increase the dosage.

Yeah congested is the word. It affects my ears and gives me headache plus this sensation of floating head wrapped up im bubble wrap or cotton wool. I have this feeling of having blocked nose but nothing to blow at the same time it even made my left eyelid swell. I used a lot of saline spray and it did give me some reluef and swelling went down. I also started Sudafed today for 3 days at doctor's recommendation. I even put garlic clove under my nose for ten 10 minutes which made me look really crazy and my daughter had time of her life looking at me. But I must say it helped; gave me sneezing attack but really cleared the airways, even my ear started pinching, so I will continue. I think there is some issue there as my ears sometimes pop and I feel normal for a second-so there must be some blockage/swelling somewhere that goes away sometimes. And I have a touch of tinnitus- esoecially left ear-a bit of a humming sound like witj hoover? And I am really sensitive to noise now. TV gives me headache straight away if not really quiet.

But this is pretty much how I feel, like having cold/flu with sore glands, intermittent headache, painful joknts and muscles and debilitating fatigue.

I got back to having half a cup od coffee every second day (black, no sugar, no milk) as it helps my energy a bit and makes my headache go. For first few weeks of this thing I could not even look at coffee and I am quite a fan. So if now I start enjoying it, maybe it is a good sign. I do watch however not to overdo it and keep hydrated.

And I am rewatching 'Friends' 3rd time in a row. Oh well.

Hi Natalie,

I had tinnitus in the beginning too, a whooshing noise, This did go away though,

 

Hi Natalie,

It is so important to listen to your body with this,  I never thought I would feel well again and was so tired of feeling sick and tired, better days will come it just takes time. Lots of rest, fluids ect. and do not expect to much of yourself at this time, This is the frustrating part. 

So grateful for everyone here for the support and encouragement during the darkest months of this illness.

Hi Nicky, glad to hear you are having some ok days

I have had several days that have been a bit of a struggle. I know I will again have better days. I am looking forward to them!

Rhonda

I've been to the GP and she was clueless. Now I'm trying to get an admission to the hospital. It would be the 4th time in the hospital for me within the last 5 months. I doubt they will find anything new, just rolling the dice. And also cannot cope with my job, so I'm better off in the hospital. Waves of the initial symptoms (and new ones also) still come in waves. Fuzzy and slow mind, body feels like shaking without doing it, twitching, sudden body jerks, slight tremor after exertion, inflammation and aches in different body parts, and the chest aches being the worst, since I always try not to get scare and call the ambulance.

Oh I am so sorry that you are feling so awful! I hope it goes away soon for you! You probablu will feel more secure in hospital anyway and maybe there will be someone day who has a clue?

I am keeping fingers crossed for you!!!

HI Natalie

Oh do I understand you there, I still get those blockage/swelling and those humming sounds in my ear, and my nose, God that's so true there's nothing to blow 😂 it gives me swollen eyes and headaches but they're not always there I used to have them all the time but nowadays it happens every once in a while!

Too bad that you can't go for the monotest! Doctors can be really a pain in the *** sometimes I'm sorry.

Today I've been having more dizziness and felt like I was about to faint a few times... I'm used to it all but makes me anxious 😖

HI rhonda!

Thank you so much!

What have you been through these days? Indeed you have your great days back, NO DOUBT!

Niky

HI there,

I'm really sorry that you're going through all this, it's really sad and debilitating!

As you know you can always come here and talk to us, in the end, we do understand each other!

Hang in there, you'll have your good days soon just please don't let yourself down as it weakens your immune system.

Hi Path,

I am sorry to hear you are feeling unwell, I hope the hospital can help.It is good to be checked, better safe than sorry, All the best.

Hi everyone,

Thinking about you all...

Natalie - everything will be okay for you, you will get through this and things will get better, I truly believe that for you, it's a horrible time I know but there is hope today...hang in there

Path....so sorry to hear things are so bad and you've been struggling, it's an awful feeling having to deal with hospitals and everything I know especially when you don't feel they are helping the way they should - just want you to know I'm thinking about you and still fully believe in your recovery

Mono....thank you so much for your kind and inspirational words to me and everyone on the site....I fully believe that you will get through the battle too and kick this virus into touch for good

Rhonda.....you have been a great support to me too in your words and just want you to know that I believe God is looking after you and will give you new strength and full health back again

Nicky.....just hoping you are feeling okay and I know it's been such a long time since November you have been struggling too...I do absolutely and without any doubt believe you will make a full recovery too and that happy and healthy days are ahead, thanks for all your kind and inspirational words to everyone despite not feeling the best yourself.

If I missed anyone....this blessing is for you - good health is on its way with peace, wisdom and strength in your lives, thanks to Jesus.

Thinking about everyone and hoping today can be a settled and good one for everything, remember that how you feel when you go through this is temporary and better days are on their day.

Craig

HI craig,

You're so nice, thank you for your positive comment!

Today I got my blood work results!

I got low Neutrophils AGAIN, low Ferritin... Perfect B12, and very low TSH, low Potassium and low GGT!

I don't feel like going to my MD tbh...

My vertigo is getting worse BTW.

Hope everyone's doing good.

Hi Craig,

Thank you for the kind words, I am feeling better, I have to be careful not to overdo it though.

Your advice was a true comfort during this time. I wish you all the best.

Hi Craig,

Your words of encouragement and your faithfullness to keep reminding us of full recovery because of our gracious Lord Jesus is greatly appreciated!

Your advice and others advice on resting sure seems to be beneficial.

Rhonda

Thanks for all your kind words everyone, I just want to see everyone feeling well and happy again and rid of this terrible virus. I think only those going through those seemingly endless weeks of feeling that way really understand the effect it has on you physically and mentally.

Thinking about you all and remember the support network here is part of the recovery process, the stronger the network of good will is here the more the resistance of the virus will be broken in everyone visiting

Take care and hang in there

Craig

Hi guys

I am wondering if you had the pain of tge spleen and liver go and come back?

I had them sore in the beginning of this thing, really proper sore spleen, but then it went away by week 5. Well most of it, it left me tender but not in pain. And now after this infection I had (wich did clear but left me with sore spleen and glands) it came back and I am really reneer again, especially under left ribs...

I don't have a clue what is going on. I thought it was meant to shrink or at worst stay the same and I had impression it actually must have swollen. It makes eating difficult and walkin and sleeping are problematic again. Mg GP is dismissive. He did percussion of the area, says he doesn't think that the spleen sticks out from under ribs. Could be, but definitely it is rubbing under my ribs. Of course he won't do scan..

Other thing is that I hade quite heavy menstruation and had to take antihemorrhagic herbs and ibuprofen to avoid loss of blood. Maybe this has irritated my spleen and liver? Any idea? I am not nasueated, have no problems with loo, no jaundice. Confused ... and annoyed

..

Hi Natalie, I had the same issue with spleen and liver. Yes mine did come and go.

It also effected my eating.

Ibuprofen will make bleeding worse. It does help with pain as it is an anti-inflammatory.

Hopefully you will experience improvement soon! It is a struggle emotionally and physically to deal with sothis many symptoms!

I still am very weepy some days.

We will fully recover. We are one day nearer having this behind us. Thank God!

Rhonda

Hi Rhonda

Thank you for saying this all. I started panicking that my spleen burst or something... since I am trying to walk more..

It is so so annoying this spleen and liver thing. It freaks me out.

Well I thought same thing about ibuprofen as it thins blood a bit. But gyne thinks that as it works against prostaglandins it should lessen cramps and in turn that will slow the bleeding down... God knows what to think and believe really...

This whole thing is getting at my wits end. One thing after another.

Hi Natalie,

My doctor said no exercise at all for six weeks, other than that I havent had to much spleen pain. I hope you are feeling better soon.

I've read about the complications of EBV and my pain is located right where the thymus gland is and thymus gland tumor is often a consequence of EBV. I'm going to the hospital to sort this thing out, but it doesn't look good at all, since there's nothing in there except the thymus and if it hurts, there's only something very serious to be expected, there's no temporary pain or inflammation to the thymus, like in the liver or spleen, there's no way back. Is hard to diagnose also... I'm so tired of this.

Hi Path,

Best to get reassurance from the doctor on this. This virus produces so many symptoms and subacute thyroiditis is a temporary condition that I was evaluated for when I was having the worst of the palpatations. Good luck to you and let us know how you are doing.

Hi Path,

I have had many sysymptoms eith EBV. I finally stopped looking for the reason and possible cause of each one. It seemed that each symptom could possibly be because of something very serious.

Which caused me more concern and stress. Finally I stopped looking forfor possible causes and waited for the symptoms to subside. Some took quite a while. Some I did have test to see the reason for when the symptoms were too

Unbearably for a long time. Overall once I stopped looking for reasons and read so many others with EBV had the symptoms I had less stress and it seemed to help over all.

I hope you get relief from symptoms soon. I could not have worked like you have. You are very strong to work. I admire you.

Rhonda

Hi Natalie,

So sorry to hear that like Rhonda you're having the troubles with the spleen and liver. I know it can be very common those issues, I remember my blood tests showed my liver a bit off for sometime when I was going through it, but doctor said it was nothing to worry about it would get back to normal in time.

Same for the spleen, hopefully being a number of months into the virus means you are past any potential danger stages with this, I think in the first few weeks if the spleen is enlarged you just need to be really careful not to do anything that exerts yourself too much. If the doctor has examined you though and they are not concerned, don't be concerned either Natalie because it is normal to have pain around that area because of all the glands there, it doesn't necessarily mean that the spleen is enlarged though.

It's so hard not to worry I know, of course do see the doc again if still not feeling any better with that. As Rhonda says you definitely will get better with God's help, I really believe that Natalie - hang in there and thinking of you.

Craig

Hi Path,

I understand what you're going through as I was the same, feeling all these different symptoms and fearing the worst because it seemed so severe and real and surely it had to be worse than glandular fever.

But Rhonda is most definitely right, this virus can cause all sorts of unpleasant and at time severe symptoms, it doesn't mean to say anything else or worse is wrong with you, in most cases it's just part of the process of this virus unfortunately.

I wish it was easy just to switch our minds off and not let is run away with itself, it is good not to trawl the other internet sites where there is a lot of scare mongering, just see the doctor if concerned and explain how you feel and what your fears are.

Remember God is with you and everyone going through this and has more power than the virus and the whole world put together, and He has good plans for your future Path - there will be full recovery, just hoping you can feel a bit more settled in the meantime and there is still lots of hope and I do believe you will get better - totally and completely without any doubt whatsoever I believe that, so hang in there.

Take care

Craig

Hi Craig

Thank you so much for your kind and uplifting words.

Like you and Rhonda say this condition causes so many weird and horrifying symptoms which really play with our minds.

At the moment I find dealing with it all mentally very challenging. The fact that there doesn't seem to be a progress there is so depressing and I just feel taken out from my family, social and work life. If at least I could say that today I can walk and feel ok for say 50 meters when ladt week it was 40 that would be something palpable and would keep the hope going that even though small, but the progress is made. What gets me down is that it is not so obvious. I thought I eas feeling better walking and now I am back to square one with wobbly legs, dizziness and feeling light headed. Staying in bed is no good for my head, pushing myself even a little bit is no good for my physical health it seems... i just cannot win

But hey, some people have it worse. I am angry for feeling sorry for myself.

Anyway thank you for your lovely, supporting words from people who do believe that I am not just 'tired' or 'should just get myself together because I am not 85 year old'...

Hi Natalie,

I  tried to push my myself in the beginning and then just surrendered to rest, I took online continuing ed for work and just read, watched TV and worked from home, no exercise as I could hardly make it through the grocery store without being shakey and having wobbly legs. Someone told me in the beginning to listen to my body and I finally did. Best of luck to you it can be a long and depressing process but it will go away with time.

Hi Natalie,

Oh please don't be angry at yourself at all, what you have been going through is an awful experience, it is very real and it is very easy and natural to get you so down, especially when you feel like you're trying so hard and not seeing as much progress as you'd like.

Natalie just do your best to keep calm, and I want you to keep remembering that even if you don't see recovery today or right away, you most definitely will see recovery - it's a terrible shock to the body this and it can take a few months unfortunately, I was the same thought I wasn't seeing any progress and that I would never get better or feel the same again - but just want to reassure you what you are going through is a normal course for the virus, awful as it is, and that you will make a full recovery given a bit of time and get back to full health.

I know it doesn't help much when going through it at the time, remember even small things to try and lift your mood, if you can still see friends or do things which don't exert you which you enjoy and relieve stress, even just reading or watching tv shows you like, etc - distraction is good and anything that removes stress is good too.

Thinking about you and wise words from Mono too - don't push yourself too hard, that's the key mistake too many make and it puts them back in recovery, rest and removing stress as much as possible is very important.

Hang in there and remember YOU WILL get better!!

Craig

I've pushed my self in the beginning also, and it definitely wasn't that good. Well, I didn't know what I had for a while, so I didn't care about resting.

I've been in the hospital. This time they're convinced I need to go to psychiatry and that all my problems are imagined. I've told them about my chest pain. One doctor, a neurologist, didn't have a clue, he sent me to psychiatry and the other 2, generalists, about the same. One said it was some bone pain (I know it isn't, since I had that too and is different), another even got angry, because I told her about the thymus gland an she wasn't even sure what that was, so she scolded me for trying to diagnose myself. The neurologist didn't even want to aknowlkedge my neurological symptoms (jerks, fasciculation, visible (!!!) eye droop). Some of them are so clueless, worse than a regular people from the street, they check some reflexes and if they're right, then you're 100% fine and need psychiatry and sedatives.

I'll wait several more days and then I'll try to do a paid CT and hope to find a specialist to read it. It will be difficult without a reference from my GP and I can;t request another one since I've already used a few in a short period of time.

Hi Path

I do have the pain in that area too now and again, wad even worried it wad steming from heart. I ignored it for time being as all the symptoms I have are absolutely weird.

If you are able to fly maybe try go abroad for few days: Germany, Poland, Czech Republic, Spain I think too you can get CT done with no referral in a private hospital. Usually for much less then here. Just a thought. I have done it when I damaged ligaments in my leg and GP would not refer me for one saying it was only strain. Well he was wrong but that is a different story... worth researching maybe to see if you can get something like that done. Just a thought.

I do sympathise with your distrust to some people from medical profession as I have been through something similar already in the past when I was diagnosed with epilepsy and depression when it turned out to be tetany due to low minerals (calcium and magnesium) and underlaying cause was gluten intolerance. I too was sent to psychiatrist many times... so hang in there, there is answer to your questions. I hope that CT scan won't show nothing and it all would be just because of this insane virus.

Thinking od you!

Hi Craig

Thank you for your words. They really pour hopw in my soul. You would make a great therapist! Really.

I am trying to keep my marbles all in one place. I have gone out for a walk yesterday as even though it is a huge effort and I am wiped out later it lifts my mood. I think that overall it is worth it as when I only rest I sink into depression and it is not good. But I am watching what I am doing. I stay in the garden a lot, even if only to have a cup of coffee and for meditation. Nature is and always has been my healer.

I am waiting to see a herbal doctor in next few days and will see what she can offer.

Also started counselling. Can't harm and maybe will help. Looking back I have beem through an awful lot this year and the depression is somewhat unsuprising outcome and only made more vivid by the fact that all my coping mechanisms are away (work, sport, social life). I have been very very low in last few days and it really scared me. So need to try and do something about it. Keep your fingers crossed for it please

Luckilly I have amazing friends and my mum helps me a lot. And you guys here are great too. I could not do it without all this support.

I re read your post and I am thinking have you had your calcium and magnesium checked? Blood serum test is not very reliable as only miniscule amout of minerals flows in our veins, most of it is in muscles, brain, bones. But if you are borderline low in the tests then you have significant deficiency. That can lead to many nasty symptoms from every single part of your body. Twitches, jerks, loss of muscle power, cramps, headaches, brain fog, lack of energy even change in your heart rythm. Been there.

Try to get the tests done. Also read about Chvostek's sign and Trousseau sign. They are used to diagnose latent tetany. You can get EGM test done too, not very pleasant but reliable, also EEG and ECG can show some variations.

It is a nasty condition but it is possible to live with it and it can be managed by aa good regimen of minerals. I have had it for 15 years. Sometimes under control, sometimes when I am ill, under stress, sleep deprived (that is a biggie for me) it flares up and makes my life really difficult. Also most doctors are ignorant when it comes to it. I have been diagnosed by a good neurologist and then endocrynologist looked after me for years. Now with this mono my tetany is not great again, as expected of course my GP is clueless.

Take care, thinking of you!

Thanks for your advice. I've already tried magnesium, calcium, sodium and potasium in pretty high doses, each separately and all at once, didn't help, some even made it worse.

I've inclined to believe it's the thymus since I've also recently had a diagnosed pericarditis without liquid seen in the pericard, and my ekg is still deformed, like something is pressing against my heart, but the inflammation tests are negative. It all links together with the heavy btreathing withthout lung problems and upper-chest pain.

Hi Path and Natalie,

This virus is the worst, these doctors do not sound very compassionate, I am so lucky to have had a doctor that had a long bout with a virus, she did say however to allow time for healing, her journey was a long one so she understood.

 I tried to take comfort in blood tests and x rays that were negative and now that I feel better, I know it was this stupid virus, it really does cause so many symptoms, I was tested for Lupus, Mystenia Gravis ect., the depression has lifted also , it is very easy to be depressed when feeling so bad for so long.

A lower dose of vitamin may help, I think in high doses it can be a bad thing, I had low vitamin D and took a little higher dose for two months and then just normal multi vitamin.

Hi Mono, did you experience a great deal of muscle pain? If so for how long?

Thank you!

Rhonda

Hi Mono

Thanks for your reply. I am trying not to overdo it and enjoy books and movies with intermittent walks in the park

It is a long process, you are right there.

Natalie

Hi Rhonda,

Yes, I did more weakness, shakiness and some pain It has lasted for most of this process( six months) and I still feel it on the down days.

Hi Natalie,

That is the hardest thing (to not overdo) just listen to your body and try not to worry about the recovery it will come.

 

Hey Natalie,

It sounds like you are doing all the right things to help, that is great to do things like sitting in the garden and when you feel able to going for a short walk. Hoping that you get on well at the doctor too, just wish most of them were more helpful than they are usually!

Certainly also good to give counselling a try. People underestimate the mental side of glandular fever, because it goes on for so (temporarily) robs you from your normal and active lifestyle then it is so hard to deal with, especially when you don't see progress as quick as you want.

Everything will come in time Natalie, just wish it would come quicker for you and Path, Rhonda, Mono and everyone on the site too - remember not to panic if things don't come right away because they definitely will come, there definitely is recovery and this virus WILL be kicked into touch and you will get back to a normal lifestyle.

Thinking of you and remember every day away from the day of infection is another day towards recovery and another day that your body is working to get on top of the virus (in fact the times you feel worst is usually when your body is learning the most and preparing for better health in the future)

Craig

Hey Rhonda,

If it's any help, around about the stage you are at I went through a terrible time of joint and muscle pain for a few weeks, I started to bruise a lot and didn't know where it came from - but looking back for me I think that period actually helped trigger and accelerate recovery, because after a few tough weeks of that things seemed to get much better.

Really hoping that this settles down and this can be the overall start of better things Rhonda!

Take care

Craig

Hi Craig

Your guidance is amazing. I started having feel good moments but i am learning how not to overdo it.

Have you had any experience with oversensitivity to noise? I cannot handle loud environment, even telly being loud, makes me cringe and gives me headache and panicy feeling almost. It is worst when I am tired. Almost like my body is defending itself from sensory overload...

Natalie

Hi Natalie,

I remember feeling that way about mid way through the process, it is better now.

Hi Natalie, I had sensitive to noise really bad. I needed a very quiet environment. A sudden loud noise sent shock waves through me that hurt my entire body. I can tolerate noise much better!

You will see that it gets better with time.

Hopefully soon!

Rhonda

Hi Natalie,

Definitely take reassurance from Mono and Rhonda's words on that, I think the physical effects of the virus can be so debilitating and real and hard to cope with that it certainly can cause all sorts of things, including sensitivity to noise - remember your body has taken a battering when going through this and it can react in all sorts of weird and unpleasant ways.

However, the important thing to remember is that you and your body are stronger than the virus, and that you have marvellous powers of recovery (thanks to God), and as Rhonda says you will definitely see that gets better with time!

Thinking of you all today and remember there is still lots of hope and that recovery is happening right now (even though it might not feel like it!)

Craig

Hi all

Just poped in to say that I have been feeling very unwell for last few days. I definitely developed quite severe depression and counselling and meditation don't work on it since it became so severe. Like someone just switched something in my brain.

I spoke to a GP and got an appointment on Tuesday. I think I will be put on antidepressants.

It all coincided with monthly bleeding and me being more active as I had few good days last week. It feels like something just collapsed in me out of nowhere.i also have quite a lot of pain in my left side.

I hope that all you guys are much much better.

Natalie

Hi Natalie,

This would happen to me everytime I tried to be active, I finally just surrendered to the depression and illness and rested, I have never been so tired of being in bed or relaxing. It will eventually get better it is just such a long process, I really thought i would never feel well again, but it does come eventually and feeling better came as suddenly as this horrible virus started. The depression would just lift on the better days which is how I knew it was this stupid virus, my daughter is suffering with the depression and illness now, she feels like she has the flu(without the vomiting). I hope better days are coming your way.

I would make them give you Epstein Barr test before they give you antidepressants and least you would know where  you are in the process.

All the best to you.

Hi Natalie, I too struggled with depression. I didn't even have to try toto be active. The length of the illness and the symptoms caused me such depression. I tested positive for Epstein Barr virus.

Hope you feel better.

Praying for you!

Rhonda

Hello everybody!

I've done a CT and the dr says the thymus is ok, but the pain in that place still lingers. Last night I've been awake from 12 to 6 or 7 in the morning, with palpitations and rib aches. I've taken a pill just to fall asleep. When I got up from the bed, at 11, my heart started to race again. Luckily I don't work on Saturdays. My mind is slow and foggy. It's the middle of my 8th month. I guess I can take about 9 or 10 months like this, I don't think I'll be able to take more without being sent to a mental institution.

Hi Natalie,

Just so sorry to hear that you've been feeling so down and depressed, and I know the feeling when your mood feels so low that you can't find anything to lift you and things just seem hopeless and helpless - it's the worst feeling in the world Natalie and I wouldn't wish it on my worst enemy.

I want you to know that you WILL get through this time Natalie, you won't always feel this way forever and what you are going through just now is temporary and it will pass. Getting through each day is such a struggle when feeling that way I know, so don't look too far ahead just take it one day at a time and getting up and getting through the day is an achievement. And even though it doesn't feel great just now, enjoyment and better days will come back in your life again.

There is nothing to beat yourself up about at all, I take anti-depressants also and have done for many years, they do help me and it's certainly worth a try Natalie. Sometimes this virus just gets you to a stage that you're at just now, where it seems to have tied you up everyway and you can't see a way out - but let me reassure you that despite how awful it feels right now, you most definitely WILL recovery physically, mentally and emotionally - there is hope today and you WILL pull through this, just don't put pressure on yourself - there's nothing you are doing wrong just needs time sometimes unfortunately, but I know all that time thinking is not good for you so if you can do small stress-free things to keep your mind occupied each day that will help.

As Rhonda says, praying for you and we are all with you and there is going to be recovery for you Natalie - what you're going through is awful but it is something that can be unfortunately normal, I know that doesn't make it any less real or hurtful - key thing is to remember this will all pass over and is temporary, your mood will lift again and your body will recovery from this, and if it doesn't happen right away again don't panic, recovery from the virus can take time but it will happen and will happen sooner than later I truly believe!

Taking B-vitamins can help with mood, even eating bananas and things like that with b vitamins is good and taking co-enzyme Q10.

Thinking of you Natalie and remember there is no shame whatsoever - it's perfectly understandable to feel this way considering what you've been going through, and at the end of it all you will feel stronger and happy to be set free again, which I believe God will do for you - He's with you through this Natalie and won't leave you.

Your friend

Craig

Hi Path,

So sorry to hear you've been feeling that way and struggling also, yes that's definitely true it still can take a little longer but be assured that you won't have to go through anything like the 8 months you have went through again - those are by far the worst and there will be better days ahead.

Hoping things settle down and thinking about you and rooting for your recovery - still fully believing in a full recovery for you without any doubt.

Take care

Craig

Hi Craig

Thabks you for your kind words again. It is much appreciated. Really.

I was in A&E today. I have nasty pain around my left ribcage and stomach. Had bloods taken, chest X ray done for the lungs. All clear. They ordered not urgent scan for my spleen but that won't happen before few weeks. Clearly a main hospital in capital city of Scotland cannot get USG done on the spot.

I was discharged with an advice of 'we don't know why you have pain. Take it easy. Take paracetamol. Oh you feel low? Why would that be?' Maybe because nobody really wants to take responsibility for my treatment and I am bekng passed from GP to hospital and back again.

I asked them to check my electrolites since iI have problem with them and they cause really painful muscle spasms. Nope cannot be done.

Since I got back from hospital I have reallys sore ribcahe both sides and back so I am leaning towards tetanic cramps. I shall try to take a bath in magnesium flakes and see if that helpes...

I literally left hospital crying. They were happy to discharge me yet again without running tests they should run and admitting that they don't know what is wrong with me. Luckilly I had a friend with me who saved me from mental breakdown. The doctors did not even address how I feel moodwise. At all. Absolutely appauling.

If I ever recover from this I think I will make a decision of actually moving countries. I had few encounters with NHS so far and each and every one eas traumatic (including having an Obstetrician in charge of delivery of my child who was struck from registry for being inadequately trained !). So sorry for a rant but I just had to vent this.

Natalie

Sorry about your experience, Natalie. I've got ribs aches and stinging. Had x rays also and the usual blood tests, echography and even a CT. Nothing came up but I still feel horrible. Most doctors are sending me to psychiatry, since they cannot figure it out. I hope we will get through this as soon as possible. I myself don;t know how long I will be able to cope with this.

Craig, thanks for your encouragement, I hope I will make a recovery in my current 8th month or 9th, just like you.

Hi Natalie,

I was diagnosed in late October and was back in the ER in late December with all the terrible feelings you are describing, at that time I thought I should be getting better and felt worse, I had no idea what a long process it is and how depressed it makes your mood, the aches of the flu, heart palpatations, spleen pain, utter exhaustion, anxiety, I had severe weakness of legs and arms and totally normal blood work.( other than the Epstein Barr VIrus, which does not show up on your normal blood work)  I was discharged as you were and told to go home and rest. It was so upsetting because on the surface you look fine to the doctors and they have no idea how you feel inside.

I didn't think I would ever feel well again, I have been feeling better for about three weeks now.

My doctor was the victim of a virus that left her hospitalized and off work for a very long time, she stressed the importance of rest, nutrition and she listened to guided meditaton online. She literally was the turning point for me as I would try to do my normal routine and would just relapse, even walking through the store was more than I could handle. 

I am very grateful to the forum and Craig for always giving me hope, when I had none, I had literally resigned myself to the fact that I would feel this way forever. I am happy to report I feel much better, still taking it easy though,

Hi Path,

I am glad your CT went well, I hope that your long break brings your healing, that you have been able to work through this is a miracle.

Hi Mono

I am glad you are better.

Yes, it exactly feels lile it: you are feeling so so unwell with symptoms coming from the weirdest parts of your body and the doctors only say but your bloods are fine. Or' yes it is very frustrating, well go home and rest'. With yoy they at least confirmed EBV, with me no. And i am too inwell to travel to private lab.

I have a the feelings you describe: heavy arms and legs, chest pain, headache, abdominal soreness, back ache, galnds ache, I just feel like a wreck.

And now my mind is playing me very much. I developed depression and panic attacks. The GP has no idea how feeling unwell for so long affects mind.

Glad that at least you are getting better.

Hi Path

I am glad your CT went fine. I can completely sympathise with you when it comes to feeling like losing it. I am struggling too to deal with this all.

Natalie

Hi Natalie,

That's awful to hear about the experience you had at the hospital, I totally empathise because I have been in that situation before too. When I had glandular fever, I pinned my hopes on one particular appointment and it didn't go well and I felt so hurt and low and it just really got to me that noone seemed to be taking an interest.

Remember though that there is a greater power than doctors and nurses, there's always another divine factor and that's God, He will get you through this terrible time I believe that I really do.

Just hoping things can settle down a bit, you must be emotionally drained at the moment with your mind racing as well as the horrible physical effects. Remember be reassured that this is often the way this virus goes, it does it's best to bring you to your knees and even if it feels like it has done that for a time, it doesn't mean to say it has won and you won't recover - because you will recover Natalie, hold onto that hope and this is the worst part you are going through right now and there is a turning point very soon ahead where things will start to improve and life will become more normal again.

Thinking about you still and feel free to rant on here anytime!

Craig

Hi Mono,

Thanks for the kind words too, I just want to see you and everyone feeling so much better because I know how horrible it is to go through it. I'm so glad to hear that you are seeing improvements and feeling much better, that is marvellous news and remember just take things slowly still and do things at your own pace as you gradually grow stronger all the time (I believe that will continue to happen for sure).

Path glad to hear your scan went well and thinking about you and everyone else here too - hang in there and remember everyone reading this right now suffering and struggling - these feelings are temporary and you will get better without any doubt - it feels like it lasts forever at the time but eventually your body does get on top of it and nullify its effects, and that is a marvellous day ahead for everyone here to look forward to.

Craig

Hi Natalie,

I never had panic or depression until this illness, it has now gone away. My daughter still has these symptoms, she has been sick about a month less than I have, I am not sure how the virus does this, but just keep telling yourself that it is a symptom of this awful illness. You will have hours of clarity where it just lifts, I like to think this is the immune system fighting and trying to control this virus. Be very careful about exertion even in small anounts as it tends to bring on symptoms and make you feel so tired and worn out.

I was sick for six plus months,( not to say yours will last this long )but it has been a learning journey about allowing myself to just relax and take it easy and have faith that this will end one day.

I know how scary these feelings are, I would literally wonder if my legs would support me at times.

Hi Mono

Thank you for your reply. Sorry for a delay I had really horrible two days moodwise. Luckillu some friends visited and gave me a shoulder to cry on.

I have managed to pressure my GP to finally admit that they missed things. He printed out tests (was not a happy bunny) and although my monospot test was negative they did find reactive lymphocytes on 12/04-nobody mentioned it to me. Also even though my bilirubin was within normal readings, it did spike from 8 to 18 on same day when they discovered reactive lymphocytes.Even with my minimal training in biology I can see from those tests that my body was evidently fighting a viral infection and it statted picking up after 27/03. It would be interesting to see results from the beginning of April, but they have done no tests then.

Ignorance of GP' s will not cease to surpise me.

The tests also showed that I might have some adrenal issues going on-again my GP was blind to it until I actually showed him sequence of results. When I told him that I actually have been diagnosed with slight adrenal insufficiency before, he realised that this info was not passed on from my previous GP surgery in England. No words. He decided to refer me to endo specialist.

Equally results indicate that I have low level of Calcium. Magnesium (i was told was fine) has actually not been done as the blood sample was not taken to right tube!

This is why I don't trust doctors!

I left withq a script for antidepressants which I am quite scared to take... and thinking to rather take my herbs (St John wort).

Speechless and so so si angry!!!!

Hi Natalie,

I also had low vitamin D levels. I think the depression is very normal, I was feeling much better and am now fighting a cold and I noticed the low mood feeling.

The doctors really have to be watched, I think they are just overwhelmed and dont take anything seriously. Ask the endo for the Epstein Barr panel. Good job in advocating for your health.

Hope you will feel better soon, know that time will bring healing, not as fast as we would hope, but it will happen.

Hi Natalie,

I really do understand your disappointment with doctors and why you must feel so let down, I really do think the health service is failing badly in our country sadly - it's so difficult to find a doctor that takes the time and doesn't write you off and looks into a person's worries, concerns and fears. Many of them just don't have the people skills or the compassion they should have for the job they do.

Anyway, channel that energy into recovery Natalie - most important thing is to focus on getting you feel a bit better, and you most definitely will feel better again and get through this awful time in your life. Your body will recover from the glandular fever - even if it takes a bit of time you WILL fully recover, and your mood will lift too, it's so draining when you feel that way I know Natalie noone can explain how awful it feels when you feel so low and can't seem to lift yourself up - but hang in there because God will help and lift you up again I believe.

Natalie, of course it's a personal choice, but there is nothing to worry about in terms of taking anti-depressants. There is no shame in it whatsoever - I have taken them for many years and if they help you feel better then that's all that matters. Millions of people take them. It can just help settle the chemical imbalance which causes the low mood at the moment. It can feel quite odd for a few days when you first start to take them until they get into your system, but usually within a week or two that is fully settled and you can feel them starting to help. But of course discuss with friends / family, do what you feel comfortable with but don't want you to fear taking them or anything because they can help.

Thinking of you and hang in there

Craig

P.S. I sent you a private message also Natalie

P.P.S. Thank you so much Mono, you are an inspiration the words of support you have given to everyone - I think you're just marvellous and thinking about you in your recovery also

Hello everybody,

I'm in the second half of my 8th month. I still have body aches (mostly ribs but other parts too) and some shortness of breath. By eyelid is drooping and is swollening, mostly at night. In the morning I wake up with aches and inflammation. I'm 4 weeks apart from my summer holiday leave.

Natalie, what tests have you done for lymphocytes? I've only done a lymphocyte count together with other blood cell count. Are there other special tests that I can do? I'm also disappointed with the doctors I had to deal with, some without minimum knowledge (GP and some specialists) and some dismissing it as psychological just because they can't see anything in their minimal tests.

Hi Path,

No sure the names of tests I had, they were trying to rule out Mystenia Gravis, lupus ect. that is how I ended up having the Epstein Barr virus panel, I believe that you said you had this test. Have you seen an infectious disease doctor?

I've seen a neurologist, but she did a lot of tests (which is still minimal for the diseases and deficiencies that exist). She tested for auto-immune diseases and sevgeral viruses and bacteria, but the lymphocytes test only included a count and a percent, same for the other blood cell types, only counts and percents, without sub-type differentiations, cell morphology etc from what I can figure out, since I'm not qualified to understand those results that well.

Hi Path

I have had several full blood counts and that is the extent to which I was tested. On one of them I had lymphocytes in a range of 10000 (from my usual 6000) and reactive lymphocytes. I was not impressed as the result did not specify the percentage and type of those lymphocytes not to mention the fact that GP did not even see it as it was on comment section.

The result was from 12/04 so the reactive lymphocytes showed in my blood only after some time. It looks like my body was taking time to activate those.

From what I gather they are specific for viral infections like EBV, CMV, adenovirus, parovirus, herpes, etc so all the nasties that actually cause mono.

And in terms if your symptoms: I do get a lot of pain in my ribs (maybe this virus caused inflammation on the cartridge too?), chest bone and back. Funny is that the symptoms come in waves. So initially tonsillitis and everything around my throat and neck and face. Then fatigue, spleen and liver, then throat and general flu feeling, and glands oh dear God glands, then ribs, then mood, now i again feel pain in my ears and glands and fatigue and really low mood. oh and for ladies I am starting to thinknthat itvdoes affect my menstrual cycle too, and makes my PMS a trip to hell.

So unless i am crazy (which I am sometimes inclined to believe now) it affects EVERYTHING.

Also I take my hat off to you. How you managed to work through it I don't know. Huge, massive, incredible respect. I am not even able to sit at the table now.

Natalie

Hi Natalie,

Definatly not crazy, this virus just makes you feel that way. My daughter has the PMS mood/depression issue too.

Hang in there it will get better, but it sure doesn't feel that way while you are going through it though.

Hi Mono

I always had a touch of PMS, mainly limited to eating crisps and chocolate and crying on Pampers commercials two days before but since this started - all I can say that is a whole new leaugue😨

Natalie

Hi everyone,

You're so right Natalie, it can effect everything and cause all sorts of strange symptoms - it can affect one person differently from another, often with the common threads of fatigue, feeling wiped out, and just not feeing well or yourself at all.

The stuff about the blood test results is a bit over my head but be reassured that if your doctor says the tests come back normal, despite the frustration that you are feeling unwell still it's a good thing - because it generally tells you that it is the virus and after effects which is causing everything - and all that does and will disappear in time!

Thanks again Mono for all your amazing words of support for everyone, and still believing in complete recovery and full health again for you, Path and Natalie - without any doubt whatsoever I still believe that, hang in there - just hoping for a good and settle time for everyone just now.

Craig

 

Hi all

Just to give you update that I managed to get some stuff organised. I will have synacthen test done within next 2 weeks (I was told) to either confirm or exclude adrenal background of this fatigue.EBV or any more serious infection can be very devastating for someone whose adrenals don't work right and the fatigue then is doubled. So we will see.

Still extremely tired, pains in ribcage and back and neck. And now I wake up for no reason at 4 am and cannot sleep again. I just wake up feeling all tense and sore and unrefreshed. Wrr. Read somewhere that if you wake up sore it means you have not moved enough at night due to being too tired. Also stress apparently wakes you up at 4am.

Natalie.

i Natalie,

I went through that too, I would wake up early not able to go back to sleep with an anxious feeling, this is now better and I can sleep until around 7am.

I am glad your doctor is listening to you, this virus is very tough, know you are not alone,

It definitely has nothing to do with moving enough. I move a lot during the night, but still wake up with rib and chest aches and the feeling of being sick. The aches start early in the night, maybe it has something to do with the body defending itrself less during the night and inflammation taking over, but in the morning the aches are the worst.

I don't know if they do synacthen tests here, but I guess very rarely, I would like one too.

I have a referal to the infectionist. I know somebody working there and she can arrange to keep me in the hospital and I think I'll go in a few days, maybe a week, depending on how I cope with work. I don't expect much though, I don't think they do a lot more tests beside those I already had.

Today was the third time I forgot my phone at home within about 10 days. My mind is in a complete fog.

I am sorry Path that you feel this brain haze. I know the frustration. But the fact that you are able to work through this is shows what an amazing person you are. Strong and tenacious.

I think it is great that a specialist in infectious diseases will have something to say about you. In my humble opinion everyone who ends up with symptoms like our so lomg after initial infection should be referred. This is what they are for. Anfld who knows maybe he will have an idea how to help your body heal itself.

Hi Mono

I would not say he listens. I think he just felt silly and a bit ashamed when I started crying in the middle of his office and maybe he thought that actually trying to do something for me would be a nice idea.

Also my friend was there and she did a good job convincing him that I don't melt easily. So if I do now, there is a good reason.

And I actually do have a background suggestive of possibility of adrenal issues, they just completely ignored it until now.

But at least it is moving forward. We will see. I am sure that anybidy's adrenals can be exhausted with mono. It is such a huge stress on the body and mind and lasts for ao long too.

Hi Natalie,

I too suffered with back, neck, ribcage and general muscle pain not only when I waked but all during the day. I also the early morning waking and anxious feeling.

My sleep has improved and seldom get the anxious feeling anymore.

The pain is better also. I find frequent periods of rest throughout the day helps to make the pain less frequent.

It seems to me time and lots of rest is the most important to recovery. Rest is even more important when we start to feeling better it seems .

This process of recovery sadly can not be rushed.

Rhonda

Hi Rhonda

Yes I completely agree. An Australian naturopath and MD (don't remeber the name but he made sense) said that with fatigue the key is in: the minute you feel you have more energy GO TO BED. Because only when you have at least tiny pool of energy it is possible to expand it. If the pool is dry because you keep using water all the time and it needs changing all the time you will always stay with the little water you got or nothing. It made sense to me.

Rhonda, Path and Mono I forgot to ask. This pain in ribcage and neck and back was it burning type of pain? Mine feels like burning of some sort...

Natalie

Hi Natalie,

MIne is mostly neck/back pain now and more of a soreness/tingling.

Hi Path,

I am glad you are able to the the infectionist. Let us know how you come out, Best of luck in your journey.

Hi Natalie, yes it is a burning feeling .

Rhonda

Hi everyone,

Just hoping that all these awful aches and pains can settle down for you, hang in there Natalie and Path, I really don't think doctors and most people realise how draining and life changing an experience having to live through all this can be. But remember in your hearts there is hope - I still believe in recovery for everyone who visits the forum here, I want the forum here to offer a symbol of hope for everyone because when feeling so low and so helpless, it's hard to see or feel hope I know that, but it really is there and God gives that hope today for recovery - He is greater than this illness and will conquer it for you Mono, Rhonda, Natalie, Path, NIcky, Shabby, Jeffrey, Johanne and everyone else who visits, I truly believe.

I do agree with the comments that rest is so important - but then it's a fine line balance too because also a terrible thing is shutting yourself away from everything and completely stopping everything that you find relaxing and enjoy - so the key thing is if you can rest as much as possible but still take time to do things you enjoy like seeing friends, whatever it may be, so long as it is not too physical and draining you too much - because these things help relieve stress too and help in recovery, it's just a case of not overdoing it and making sure you get plenty of rest before and after you do things too.

Not sure if that makes any sense, I know what i meant sorry if I'm not communicating it too well!

Craig

Thank you for coming and encouraging us, Craig. I hope I (and others) will get over this just as you did.

Natalie, my pains are sometimes dull, sometimes kind of burning, especially on the rib edges.

Who had a drooping eyelid? Somebody around here said it had it but I don't remember who. Am asking because mine is getting worse, the eyelid drooping on one eye, especially at night and in the morning, also slightly swollen and the eye red.

Hi Path,

What did neurologist say about the eyelid? I have not had that symptom. This virus just attacks different parts of the body, so strange.

Thanks Path, definitely hold onto hope because recovery is on its way in fact every day is another day towards recovery.

Hope that the thing with the eyelid settles down - I do remember having a twitching eyelid at times, all sorts of strange effects seem to occur - hoping things settle down and of course discuss with the doc if unsure.

Craig

Craig, mine also started by twitching. That was months ago, it still twitches sometimes, but now the drooping and swelling is the worst.

Mono, the neurologists don't have any idea as long as the drooping is not backed by MRI clues or very serious neurological symptoms, like not walking properly or tumor generated reflexes. They usually dismiss twitching, slight tremors and such...

I'm doing a few things at school this week, then I'll go to the infectionist.

Hi everyone!

How are you doing? I hope people are feelin better with each day.

I have managed to have a lovely walk today. It is summer in Scotland so decided to take every advantage of it, as it may end as soon as it started. It was well worth it, although my throat aches now and ears and glands too... but it was worth it, absolutely and definitely.

Evidently my body reacts to a physical effort. So again pacing matters.

I am still struggling with depression. I am more and more thinking about taking pills. Although I am preparing myself mentally for it as really scared of them still.

Taking loads of magnesium helps a lot for my muscles and sleeping issues.

I hipe you all had a lovely day! I am thinking about you Path espevially as you too were strugglung a lot recently. I hope you are feeling better.

Hugs to all!

Natalie

Hi Natalie,

I am feeling better and managed a little walk myself this weekend. I think that as you go through this virus you will find the depression lifts, that seems to be the last symptom to go, along with the general malaise.

Hi Mono

Great to hear that you are feeling better. I hope that this depression will go away it is a horrible experience.

My last blood test showed no reactive lymphocytes any more and a general lymphocyte count went down to slightly below normal so my GP thinks that it is my body through the worst. Now it needs to get back to it's normal shape.

Still get glands and sore throat and twitchy muscles when tired and after physical effort. This i think will stay for a good while with me. As long as the depression goes away I can live with that

Natalie

Hi Natalie,

My numbers were closer to normal end of March, April was up and down and then in mid May I started to feel more like myself. That horrible depression and malaise is the last thing to go, I first noticed that my appetite came back and then the achy muscle feeling started to lighten up and then finally the lifting of the depressed feeling,

Hi Mono,

Do you still have some muscle aches?

Mine are less intense and frequent thank God! I'll sure be thankful when they have completely gone!

May has been my best month. I'm looking forward to enjoying improvement each month!

Everyone on this site has been a big part of helping to keep my focus on recovery!

Thanks so very much!

Rhonda

Hi Rhonda,

Only if I overdo it, a little today and last week. I feel much better, hoping that my daughter starts feeling better soon, she is about a month behind me.

I am so thankful for the forum too, as it helps to know you are not alone.

I am 

Hi Rhinda!

Great to hear that you are feeling better

I too have sore musckes when I do things. Maybe this is the way of my body saying ti me to take it easy? The glands and throat a be acfer exertion too although the feeling does go away after a day or so. Like today I feel almost like after a gym session feeling all the muscles a g joints because I was walking yesterday.

But looking at what you and Mono are saying I am hoping to be better as days come.

This forum is a God send and people on it are amazing.

Natalie

Sorry for spelling Rhonda. My phone has been playing up.

HI Natalie,

That is great you managed a walk, the weather has been lovely in Scotland for a change. Same for you Mono great you managed a walk. Pacing yourself is the best way for sure and sounds like everyone is doing the right things to help in their recovery - you can't do any more than that just let God take over and He will do the rest for you if you keep trying to do the right things.

The depression is awful, noone can really understand how you feel in those moments or what it's like when you feel so low and that way, and I know everyone here has either went or has been going through those feelings. Just want to let you know that I believe that will pass, especially the more recovery progresses - it's totally understandable to feel that way and don't beat yourself up for feeling that way. I felt it and I think everyone who went through the virus for a long time has felt it too. But it passes and these awful feelings and emotions are temporary and won't last forever - even though I know it doesn't help much to know that when going through it and feeling the realness of it all at the time.

Hold onto that hope of recovery for sure, thinking about everyone and just hoping for a good day today - today is another day towards recovery and away from the day of infection - and the powers of the virus get less each day away from the day of infection (even though the symptoms don't always initially - but that comes too in time).

Craig

 

Hi Craig

I know, today is just amazing. Weather makes such a difference to my mood. I sbould live in Spain

On a worse note just back from GP-otitis and sore throat. But got meds for it, off to pharmacy now.

I am sure it is after effect of mono. I am seeing an ENT guy on Tuesday so mayne he can shed some light on it

Take care all of you guys!

Natalie

Oh definitely Natalie we don't get to see much sun here in Scotland! Wish we had it more often!!

Hoping that your sore throat settles down, still thinking about you and rooting for you and believing totally and completely in your recovery and that God will intervene and bring healing.

Craig

HI everyone,

I've been pretty busy with work and my research...I've been feeling ok, tbh, I have more good days than bad ones, although even on good days I experience some unpleasant events; heart burns, palpitations and etc...I still have nightmares, I wake up in the middle of night run to my room' window and look outside all scared because I fee like I'm dying. Lol

I'm going nuts? 😂 my nose is almost throughout the day clogged, my throat is doing better though. Eyes still itchy and get tired easily.

Doing better anyways.

I see that you all are doing better too, that's great to know 💙💪

Wish everyone a happy and better weekend 💚

Hi Nicky,

It's nice to hear from you and glad to hear things are a wee bit better for you. I know it can be sometimes so slow progress just wish it was quicker for everyone! Hoping all those other horrible symptoms fade as time goes on, I still believe that they will without any doubt.

Have a great weekend too and hang in there.

Craig

HI craig,

Thank you, yeah so do I, I've less symptoms tbh,so I'm grateful for that! Today I feel so sluggish tho.

In a few days I'm going to go for another blood work.

Take care! 😁

Hoping that the sluggishness lifts Nicky, it's really frustrating that's for sure. Hope also that the blood tests give good signs also, and remember you're in recovery each day now and going forward and things will get better from there for you, I really believe that Nicky

Craig

Hi

I just popped in to whine a bit.

I have a horrible ear infection and my sore is sore again. And my glands too. All is back. Been to the dentist to make sure that it is not from my teeth. Teeth are great. Nothing.

Tomorrow to ENT specialist but I am already scared that he will just ignore me and will say that it will go away in time.

I just feel so hopeless and aad today. I really had enough. Had few days of feelimg better and now it kicked me again to the ground. Almost like it does not matter what I do or do 't do-this virus is clearly stronger than I am. Sorry for being a whimp here, really felt that I have to take it out.

I hope that other folk are feeling bwtter.

Enjoy your day. Hugs

Natalie

HI craig

Definitely! It's frustrating because I need to work, it's not like I get to eat for free 😂

Thanks for your positive reply! Oh btw Did you feel worse during hot days?

Hi Natalie,

It is very commom in this llness to have setbacks and I know how frustrating it is, I went in for at least two strep tests in the first three months of this virus.

Rest as much as possible and know that everyday is one step closer to a recovery, as hard as it seems now you will recover, the mental aspect is as hard as the physical. 

I hope you are feeling better soon.

 

HI Natalie,

So sorry to hear that, don't give up please! By now you should know that it comes and goes, just stay strong, I'm just starting to have more good days after almost 7 months!

Don't let yourself down! We can recover fully!

Hello

I'm here to whine a bit too.

I ended up in the ER today with breathing problems. The lady on the ambulance threatened me with sending me to a psychiatric facility. Then the doctors at the ER wanted to send me to psychiatry, but then one of then checked and said I have bronchitis. Tomorrow I'll go to a bigger hospital for an admission. Well, the bronchitis is just a small part, I have lots of symptoms, but the bronchitis they saw and believe. These doctors are inimaginable, they only believe what they see in their tests/examinations, other than that they think you're having a panic/making it up, etc. When did medicine become so good at spotting problems that patient complaints can be considered meaningless? I was lucky he checked my breathing, otherwise I would have ended up in a psychiatric hospital. Not that is anything wrong with psychiatric hospitals, but my problems are very, very physical and antidepressants can only worsen them.

Hi Path,

My daughter was just saying that we look well, but feel so bad. I think thats why the doctors discount it and then the blood work comes back good so they think you are a hypochondriac.

I am glad we have the forum so we know that this is an extended virus with many strange symptoms that come and go. I hope you are feeling better soon. How are your eye symptoms?

Hi everyone,

Natalie and Path...you're not whining or being a wimp in any way. In fact I think you have shown great courage to keep fighting and battling on through this horrible time. Mono is right about the set backs, it can happen but it doesn't mean to say you're way back to the start, you're still making overall progress - remember it's like waves up and down and things will come up again and the overall zig-zag graph of recovery is going in the right direction.

I know how downbeat it can get you when interacting with doctors and medical people who seemingly don't understand and write you off and don't show any care or concern for how emotionally and mentally draining the illness is as well as it's physical effects - but remember no matter what they say, you WILL make a full and complete recovery (even if it takes time) and things WILL NOT be this way forever - there is hope and there is recovery.

Thanks again so much for the supportive words Mono and Nicky, you guys are a blessing to this forum, and Nicky most definitely I think hotter days can drain your resources and make you feel more fatigued when feeling well, so it makes sense to me that when going through the virus it can make you feel worse on those days. But remember that will all pass!! I believe in recovery for EVERYONE on the forum.

Take care

Craig

Hi All

Thank you for your support Craig.

I came back from seeing ENT consultant. It was a waste of time. 10 mins. 2 mins for looking to my ear and throat. He said it is inflammed. No treatment needed. Basically was angry drom the moment he saw me, like i was waisting his time. He was only interested in whether I want to remove my tonsils or not.

That is me done with doctors. Whatever will be they don't care. It is all fate anyway.

I hope you guys are doing good. I am going to sleep. Had enough for today.

Hugs

Nat

Hi Natalie,

These doctors, unbelievable. Good for you for resting, it will probably do more good anyway.

I have followed your posts. This is a bad disease. I have experienced everything everyone is going through. Deep depression, insomnia and fatigue. Sometimes I just want to give up. Rest is real important. I have worked through my whole illness. Because of this I may have cfs. I have always been a driven type person. I may have done too much. Rest when you can. Craig has been a real inspiration to me. I don't know how my story will end, but I keep holding on. Keep the faith that God has a plan. I have seen some progress and some regression. Maybe it will get better.

Hi Brent,

I started getting better at 6.5 months, my daughter is going into her 7th month and was just finally diagnosed with Epstein Barr, she is having an uphill battle but I am hopeful she will turn the corner soon, she has also worked full time through this illness which causes a lenghty recovery period, but it will come, have faith.

Hi Brent,

Thanks so much for the kind words, I do believe that your story will end positively, with full healing and putting this horrible chapter behind you. Absolutely I agree and believe totally that God has a plan and to keep the faith, and that God's plan is for good - He assures us of that if we hang in there. Wish it was easier to understand everything why we have to endure at times, but God has a greater plan and definitely is for our good, and involves being in full health and prosperity!!

Natalie, sorry to hear about another unpleasant experience with doctor, it's awful I know I just wish they would show more care and understanding for how people feel when going through this - there is a real lack of that and so hard to find a good doctor who will take the time to explore and reassure and really help. Try not to worry though (hard as it is I know) because you definitely will still get better I truly believe.

Thanks again Mono for all your amazing words of support for everyone, especially with what you and your daughter have been going through. Just hoping that things get better for both of you, I really believe that they will, just hoping it comes sooner than later, I definitely believe that you have both endured the worst of it and better days are to come.

Thinking of you all and hoping for a good day today.

Craig

 

I will pray that everyone on this site has a speedy recovery.

Thank you for your support.

Hi Brent

It is indeed a nasty bug.I am full of respect for anyone who managed to work with this thing! It must have been so difficult for you. Maybe it is not CFS yet. Maybe it is just a time for rest after all hard work you have been doing.i am keeping fingers crossed for you.

I just came back from GP clinic, had a check up for antidepressants and mentioned to him my issues with ENT folk. He checked my ear and said that I have evident ear infection and need antibiotic as it is in my middle ear. Also confirmed sinusitis which ENT completely ignored. So now will try antibiotic and see if it will help. I hope that i won't break out in a rash because of it

Nat

Having hard day today. All my joints hurt and it is hard to walk. Sleep is better, but still tired.

How have antidepressants worked for you? Have you started taking them? I tried some. Couldn't sleep at all. I quit taking them. I hope your infection gets better. Sometimes I feel like I can't make it through this. I have never had anything like this in my life. Going through divorce doesn't help either. I find myself looking back at stuff I can't change now. In my case I know where I get mono. Wish I could do it over, but I can't. I must learn to accept my situation and make the best, but it's still hard. I must teach myself that it could be worse. It is just a terrible disease with crazy side effects.

Hi Brent

I tried sertraline but they made me unwell. And then I got this infection last week and decided that I can't deal with side effects of anti depressants and feeling ill at the same time. I also know that the minute I start feeling better physically I will be able to deal with depression via therapy and supplements and herbs. The depression in my case is rooted in a trauma Ihave been through in the beginning of this year but I know that if not for this infection I would deal with it without drugs. Battljng my mind and body at the same time however is just damn hard, as you anyway know best.

In my case I too have an inclination where I got this thing and same, if I could make the clock go back I would but the truth is it could happen to anybody anywhere so I am trying not to dwell on it. I think my daughter had it too but in her case it was an overnight thing thank God.

Side effects and complications of this thing are horrendous. I am adamant that this ear and sinus infection is an aftermath of mono.

I too have many times during the day when I feel I cannot take it no more. Mornings are worst for me because of depression. My mood is so low then and I cannot think clearly. A friend of mine is a NLP therapist and hypnosis specialist and started having sessions with me 2 a week aimed at lifting my mood, it does help a bit. I am waiting for the psychological therapy like there is no tomorrow. I feel that a proper psychologocal support should be given to all people affected by mono. The impaact this illness has on a patient, their family, theor emotional well being and financiql situation is huge. And frustration coming with being treated like a hypochondriac when you feel like you are dying is just terrible experience. It is a trauma.

I too hope that it will get better for all of us. I am starting amoxycillin today. I hope that it won't give me a rash any more...

Natalie

You are so true about doctors. I was told by several doctors rest for a week you will be ok. Tried that several times through out the past 11 months. Went back to work and crashed. Then it was it takes time, you will be ok. 11 months and I am not ok. So, you are right. A lot of doctors don't put a lot of time into mono.

Physicians simply don't know how to treat Epstein Barr virus/mono. There is not any medication for thi

i have a friend who thought they had mono and it was lyme disease, I guess it is something to be considered if you have joint pain.

This virus. They prescribe meds to treat some of the symptoms. Then there are the sideonly effects of the medication we must deal with plus our symptoms. Steroids and antibiotics suppress our immune system which is fighting the virus.

We will fully recover! Each day recovery is closer even though some days it doesn't feel that way.

Prayers for help and strength to get through these times of pain and suffering

Rhonda

Definitely agree Rhonda that everyone will recover. Reading about the terrible symptoms and experience everyone is going through it's hard for folk to see recovery and see better days I know, but there is hope and this virus won't defeat anyone here in the long run I truly believe that because we've got God on our side in this forum.

Hoping for a settled day today for everyone and for just so pleased to see all the good will of everyone, it's amazing the goodness of people despite the suffering folks have been going through - shows me what good people you all are!

Craig

How are you doing today?

How are you doing today?

How are you doing today?

How are you doing today?

Hi Brent

I am plodding through. Still in pain because of ear, throat and sinuses and general malaise. Trying to wait for antibiotics to kick in -hopefully.

It is International Children's day and I spent some time with my daughter-it was nice

I had a session with a counsellor today as well.

I am trying to take each day as it goes... how are you doing?

Hi Brent,

I am ok, had a few long days at work so I am a little low energy, I guess I shoud expect that. I want to get my stamina back. Overall much better than the last 6-8 months.

I am glad you had a nice day. It is good to have those when you are going through so much. My day was not too bad . I worked 12 hours but I didn't get too tired. It was actually a peaceful day . I am starting to accept The situation that I am in. I have been having trouble with my vision. I guess it is from not having enough sleep. Getting episodes of blurriness. I believe I am on the verge of CFS. If I am it's nobody's fault but my own. I have three boys and I always teach them to push through adversity. I believe I may have pushed myself too far this time. But overall I had a decent day.

I worked 12 hours today myself. Not real bad day though. I am starting to practice acceptance of my situation. It has actually given me some peace. Hopefully we will all get well soon.

Hi Brent,

You musn't be so hard on yourself, the virus is most definitely not your fault and even though you maybe think you have worked too much through it that doesn't mean to say you won't still recover and get better - because I believe you will. It helps to accept that things maybe aren't so great at the moment and take things one day at a time - but that doesn't mean to say you're accepting that things won't get better in the longer term because they will, I truly honestly genuinely believe that - don't give up that hope and remember God is there to get you through. One day at a time is all anyone can cope with and don't look too far ahead, and remember there IS recovery there for you.

Mono - also truly believing that your stamina will return too, it takes time it really does, but it comes back to you let me reassure you! I thought mines would never return but it did over time and your body resilience comes back gradually over a period of time.

Great you spent some time with your daughter Natalie - hoping you are feeling more settled and that the malaise can lift - maybe worth trying a probiotic too to help with things.

Hoping for a good day for everyone and hang in there - better times and full health ahead for everyone here!

Craig

HI everyone,

Thanks craig, when it's really humid and hot I feel sooooo sluggish, can't move my buttocks anywhere!

I'm at my parents pretending to be fine, I haven't told them about my mono experience!

These days I am too dizzy, my throat is itchy, head feels so weird like there's something in it, so fed up!

Can't continue working this way, I seriously struggle!

Sorry that I'm whining, this is the only place where I can whine 😢

Hi Nicky

You are not whining. It sucks being ill, genuinely sucks...

I am too struggling with a very sore throat and horrible ear ache

It comes back every month or so...waiting for antibiotics to kick in, hopefully...the doctor does not know if it is viral or bacterial this time and decided to give me antibiotic to prevent/heal bacterial secondary infection. So so frustrating...

I know it is so horrible to be somewhere with people you love, not being able to fully enjoy it and put a nice face on whilst you suffer inside.

I hope you feel better soon! Warm hugs!

Natalie

Hi Natalie,

Yeah, That's so true, tbh I'm so tired of pretending to be good whilst feeling sick.😢😢😢

I hope your throat gets better asap, probably the ear infection is related to your sore throat??? Have you started working?

Big warm hugs to you too 😞

Hi Nicky

No I have not been able to get back to work ever since it has all started... i am seeing my boss next week so we can look into options of working from home so that I can have some routine back and not having to rely on Statutory Sick Pay.

The sore throat is definitely what fuels everything. I think that viral infection was bugging me for so long and maybe opened way for bacterial one. My ear was sore for last two months... my nose is very sore inside too on the same side where my bad tonsil is and bad ear is. It drives me mad. How long can you feel like this and remain sane?

Take care, take it easy, eat chocolate and I am thinking of you!

Natalie

HI Natalie

Unbelievable how this virus can disable us in so many ways, it certainly makes you vulnerable to other infections, my mild sinusitis is not going away at all, I've given up on that lol.

Thanks alot, you too, Stay safe and take care, hope to hear that you're doing better in the next few days.

Hey Nicky,

You're not whining at all, it's totally understandable because it's such a frustrating and horrible experience to go through. And it must be extra hard if you're trying to put on a face as though everything is okay, if possible do try to talk to someone close to you, a friend or family member you trust about it, it really does help to talk and it's such a weight to carry yourself - I know it maybe won't make the symptoms go away instantly but just to know someone is there and understands makes such a difference - the people on the forum here definitely do understand having went through it.

AND most important of all is...there is hope and there is still recovery for you - your system is just going through that horrible phase where it's still not quite strong enough to get rid of infections and the after effects - don't worry because your body has to go through this phase as part of the full healing process - it passes and your full body resilience and strength and ability to cope physically and mentally wlll come back again, I totally and confidently believe that. Jesus will bring healing I truly believe.

Natalie - same applies for you without any doubt - really good luck with seeing your boss next week, just hoping they can be understanding and that's definitely most sensible way a phase return / working from home - sounds wise to me, and remember don't push things too much - health comes before work.

And if you're eating chocolate...good bit of advice...make it dark chocolate!! Good for the energy levels!!

Hang in there and thinking of you today - hugs!

Craig

Hi Craig,

You're right, I decided to talk about all that I went through with my siblings, surprisingly they weren't so surprised as one family friend has been struggling with this nasty parasite for months too, I feel better emotionally as they comprehend me and I don't no longer feel I'm obliged to go here or there with my family...I get dizzy when I stand up it lasts a few seconds and goes away, totally fatigued, now I realise how much I had recovered last month...I'm tired, can't even enjoy my vacations after 5 years of working continuously 😭 I feel like the trip made me more sick.

Hi Nicky,

You did the right thing talking to your siblings, and keep talking to them if you can when going through tough times with this, it's good to hear that they understand and those that know you and care about you will understand most definitely.

It's so frustrating I know, so sorry that you haven't been able to enjoy your vacations - there will still definitely be better times ahead, and recovery is happening right now I truly believe for you Nicky - remember it's zig-zag, up-down sometimes with this - but overall the graph is moving in the right direction towards recovery.

Don't be so hard on yourself, be understanding and realise your body has taken a battering and needs time to rest and recovery - and it will without any doubt it will Nicky. Thinking of you and hoping that today can be a good one.

Craig

 

Hi Nicky,

Glad to hear you shared what you have been going through with your siblings. Sorry you are not feeling well enough to enjoy your vacation. I too continue to battle with fatigue , muscle and joint pain. I am having some better days. we are all one day closer to the return of our health!

Thank you Craig for your continued support! There are many times your words have given hope in our very lonely dark hours! God sure has used your faithful encouragement to lift usup up so many times!

Rhonda

Hey Rhonda,

Thanks so much for your kind words I'm really grateful. It's much easier to give helpful words / advice / tips rather than to take it, I know that i was worried, scared, tired and depressed when going through this virus and those memories are vivid with me and I just want to reassure others that all those physical and emotional symptoms pass in time and there is hope and light at the end of the tunnel (so hard to see when in the midst of it all though I know that for sure).

Rhonda may I say I have seen real strength and courage in how you are dealing with this horrible time that you've been going through, that you've remained faithful and trusting in God throughout despite how hard it has been and taken the time to uplift and encourage others whilst dealing with the symptoms and ups and sometimes steep downs yourself - I really admire that and believe that God is watching and so pleased with how you have responded and will absolutely bring healing, restoration, health and new strength through the Holy Spirit to you.

Hang in there Rhonda and just hoping for a settled and peaceful day for you today - your total and complete recovery IS on its way and IS happening as we speak, I truly believe that.

Craig

 

Craig this hope is an anchor strong and trustworthy. It leads us to God's sanctuary.

This anchor holds in spite of the storm!

You are so right. Just as our Master said

It is more blessed to give than to receive.

Thank you for continually giving to us in our time of need!

Thanks to everyone for sharing their experiences and encouragement! There are so many blessings and goodwill on this forum.

Rhonda

Thanks Rhonda, most definitely just put all the trust with this in God - you're not on your own with this battle and He's with you every step of the way and has good plans ahead for you that involve being in full health and happiness again.

Thinking of you and just hoping for a settled day today.

Craig

HI craig,

Thanks for all the support, I do appreciate that!

It's funny that I want to feel like 2 weeks ago lol not that I was perfectly in health but I didn't feel this cr ap!

I'm resting as much as I can, that's all that I'm capable of!

HI rhonda!

Yeah I think that it was the best thing that I did.

I'm so sorry to hear that you're battling with fatigue and muscle pain(this is new to me, neck muscles and thighs', so frustrating... that's exactly what I'm going through atm, plus I've an intermittent fever that leaves me half-dead

I hope that you're feeling better, thinking of you! Take care and thanks for your support!

Hi Nicky

I am sorry you feel this bad again. I am on the same boat. I had some better moments two weeks ago and now for last two weeks I am completely floored again. Fatigue has lifted a bit but I have sore throat again and sore ear, nasty headaches and just feel blah. And low mood going along with it. Brcause of the impact this infection has on me I have problems with my magnesium again and my muscles ache and move on their own. It would be hillarious if it was not annoying. Lots of personal problems to top it all up- after miscarriage early in the year which I still did not process, my relationship is ending. All at once.

So I do feel for you. I hope you start feeling better soon again... just rest and try to enjoy little things. I know how hard it can be.

Natalie

Oh dear neck muscles? This os what is driving me insane for nearly a month now. I cannot decide if it is glands or muscles but man they ache. I cannot sleep because of it and moving my head is a problem because of neck pain. You can practically chop carrots on my neck...

Hi Natalie,

This always seems to be the way, everything all at once. I am sorry you and Nicky are feeling terrible, you will feel better although it doesn't feel like it when you are going through it. Take it as easy as you possibly can, rest seems to be the key to this illness.

I get a really sore neck too with mine when it flares. Two things that have helped me are spray-on magnesium (absorbs well through skin) and also massage to relieve the muscle tension from tensing against the pain x

Hey Nicky / Natalie,

Definitely understand and sympathise with that, that you feel one minute like whilst it's not brilliant that it could be worse, and then it feels like it's gone all the way back again. But remember those relapse type experience are all temporary, and each one of them is actually helping your body get to grips with the virus so in a way it can be a positive thing in the long run (hard to see it that way I know!!). And usually these set-backs / re-lapses can be recovered from much quicker than the earlier stages of the virus, so hang in there and remember there is hope! You will get back to that stage of feeling on a more even keel again and in fact you will get back to full and complete health given time, I truly believe that.

Thanks Mono and Rosie for the good advice as always - just hoping you guys are feeling okay and coping at the moment.

Thinking of you all

Craig

 

Hi Craig,

Feeling ok, still have days a little energy sometimes, but much better than the last seven months. You have been god sent for everyone struggling with this virus, a light when things were at there darkest, I really appreciate your words of wisdom and encouragement.

Hello again,

I've just returned from hospital. They couldn't figure it out. They ruled out a lung infection, other than that they have no idea. I can barely breathe, I'm weaker than ever, my muscles are jumping around and my hands have a slight tremor and feel shaky and weak. A few specialists gave different potential diagnoses, but nothing sure, since the blood tests came ok while I can barely function. I'm in my ninth month if I remember well... Couldn't sleep either because I felt difficulty breathing. I have enough air and my lungs are ok, it's the effort to breathe that's killing me, I feel too tired to breathe. Also a violent body jerk every time I was about to fall asleep.

Doctors are like...you're ok, just be happy. Honestly, I recently started to think that I would have been better off without hands or feet but the possibility to use the rest of the body with ease, not constantly feeling like I've just been through a car accident minutes ago and everything in my body is failing.

Hi Path

I am so sorry to hear this. I really really feel for you. I cannot understand how they can discharge someone without diagnosis. Any diagnosis. If they think it only stress they should engage apsychologist and if not they should look deeper. How can they tell you to be happy? So condescending!

How is your bronchitis? That is good that basic tests are ok-a bit reassuring. At least that.

Did you ever have your magnesium levels and calcium levels checked-properly in erythrocytes instead of serum? What you are experiencing reminds me so much of me when I have tetany. Particularly your breathing issues and muscle problems...

I hope you start feeling better...

Hey. I don't know if this is of any comfort to you but I spent a lot of time and out of hospital in past year with my post-viral fatigue which gave me a wide range of really peculiar and at times absolutely terrifying symptoms. Upshot was, test after test came back fine and doctors kept telling me it was anxiety. I did a lot of research myself to try to find out what was going wrong and found that many weird and unpleasant symptoms can be caused by the autonomic nervous system being stressed. This seems to be the main theory behind chronic fatigue syndrome (post viral fatigue/chronic fatigue - they are just labels and you CAN get better) these days - and basically you have to override your brain to forcibly calm down your body so it can start healing. If you possibly can, lie down, do meditation or mindfulness even if you can only manage a few minutes s day at the moment. Any relaxation you can do will calm your body and start it into a more positive cycle. If possible get others to look after you, bring you food etc so you can rest properly and start to heal. It sounds far too simple I know but if you keep doing it and keep doing it it really does work. Your body is so stressed it is probably not resting properly even when you sleep. If you can calm it down you will rest better and begin to recover if it is post-viral.

Best wishes x

Hi Path,

I am sorry you're having such a hard time, I assume they have evaluated you for Myastenia Gravis and Lyme disease. If they cant find anything it must be this stupid virus, my daughter is going into her eighth month and is still having symptoms of exhaustion, achy muscles ect. I hope that your long break will bring your healing. We are here for you, please let us know how you progress.

I've been tested for Lyme. For MG I have to do a EMG, but I doubt it;s MG because I don't have proper muscle weakness, it's more like a fatigue, but I will do the RMG also if I don't recover soon.

My magnesium levels were tested in blood and was fine. Took magnesium supplements anyway, 2 kinds of it, and didn't help.

It seems to be the nervous system or some body system broken by the infections that lets in toxicity, it's like a toxic feeling, like being poisoned. I also had blood pressure drops in hospital, 8/4 after 10 minutes of lying in bed (before that I supposed it was even lower, like near-fainting, maybe 6/3). They gave some possible diagnoses and here they always write "ameliorated" (improved) on the papers when they discharge you, and they insist that you're better just to be able to write that. On the last day of hospitalisation they're all like "woow, you look a lot better! What? You near fainted 1 hour ago? Wel, but look, you're walking now and you look amazing, it's nice to feel better".

I also took some benzodiazepines at night to be able to sleep (some people were snoring so loudly at night I felt like a truck was in the room) so I suspect some withdrawal too. It's strange, since I use them 2-4 nights at a time with 1-3 weeks of pause, mostly in hospitals, but I have to monitor this issue better. I'll stay off them for longer so I can be sure. I didn't make a journal to check if the especially bad days are related to benzo use/withdrawal.

Some doctors said viral can leave you with problems for months or years, others laugh when they hear it, for them a few weeks is the absolute maximum.

Hi Path

I am so sorry to hear what you have been through...

If your nervous system is wrecked you need magnesium Trust me on this one-i have issues with it 10 years and counting. The standard blood tests are useless-most doctors don't even know that. I have been in and out of hospital for a year and was checked for everything from brain tumour to epilepsy. And also had all normal thrown back at me. You feel so hopeless until you find one sensible doctor who actually knows what they are dealing with. It is good that they offered you EMG-I had it done and this is how they confirmed tetany with me-serum tests were fine. Only after EMG I had propper blood tests done and they showed so many deficiencies. EMG will also test for polineuropathy if it is requested by the person ordering the test. Viral infections have an enormous impact on our nervous system and they can start things off.

If you want to I can send you some information about proper tests for some of these things just let me know.

I hope you will feel better at home. Thinking of you.

Natalie

Ugh I'm sorry you're having such a horrible time with it. Glad they're doing tests to check everything out. But from what you've described about the feeling of exhaustion, toxicity, blood pressure drops etc it could well be CFS / post viral. I passed out repeatedly too, couldn't stand up for more than about a minute with my heart rate rocketing to 160 bpm and blood pressure dropping, shaking all over etc etc (I met diagnostic criteria for POTS for a while but this went away with the self-management stuff to get better). It's horrendous really but the good news is that you CAN improve yourself with just good lifestyle support and supportive supplements. Post viral illness seems to be your brain getting stuck in 'fight or flight' mode which stops your immune system working properly - the only way to calm it down is to avoid any stressors, do loads of relaxation, meditation, mindfulness, sleep well, eat well, rest rest rest. I basically lay down listening to audiobooks for a fortnight - after this I improved a little bit at a time and still doing so. Don't overdo activity or your system will get stressed and start producing weird symptoms again. theres actually lots of info out there on Internet about this if you know where to look - feel free to message me direct if you want amy more info. Sorry you're also going through a terrible time with it x

Just to add - when I say rested for a fortnight I mean 100% bed rest lying down. After that I could eat meals at table, then sit up a little bit each day and so on. 4 months from my major crash I am considering gradual return to work, so gradual, gradual, gradual is the name of game!

Hi Path,

It sounds like it is just this miserable virus, at least you have had all the tests

I know that is little comfort. I have heard that as the virus dies off your body can react to that and cause many different symptoms, Hoping you will feel better soon.

Hi Rosie

I totally agree. Rest and little by little. The more I try the worse it is for me. It is so hard and frustrating and depressing but there is just now way around it sadly...

Hi everyone,

Thank you so much for your kind words Mono, it means a lot and just want you to know I'm still thinking about you and rooting for you and your daughter - I definitely believe that full recovery is on its way for both of you, hold onto hope there is always that and I truly believe the worst has been weathered with better times ahead God willing.

Path, just so sorry you're having such a hard time. As Natalie, Rosie and Mono says definitely can still be the symptoms of the virus and its post viral effects, and it doesn't mean to say that you won't get better because as everyone knows how much the thing floors you it can take for some quite a considerable time for recovery - and because you don't feel it at the moment doesn't mean to say recovery won't come or isn't happening, because it WILL come I still truly believe that for you. I really sympathise there is nothing more draining and horrible than visiting doctors and hospitals and not getting any progress despite feeling so poorly, it is a classic thing for that to occur with mono and its after effects and there is still hope and God is the greatest physician of them all just put your trust in Him.

Rosie, I very much resonate with your comments, post-viral is a very real and nasty experience for people but again in my view this is very much different from CFS, which doctors will just write people off as having after 6 months or whatever. The difference is post-viral your body has had a terrible shock, taking a number of months to get to grips with and recover from (often longer than 6 months) but it will recover, CFS is real too but the VAST MAJORITY of people told they have this I believe it's post-viral still and there is still great hope for a great recovery - despite what the doctors say. So key message is - if you are worried about CFS and doctor is telling you this - look at the number of people on here struggling after 6 months still with the virus - it is normal for that to be the case and your body is still recovery, you still WILL recover and DO NOT have anything permanent that won't go away. It takes time but FULL RECOVERY can, does and will come, even for those with symptoms for longer than 6 months.

Sorry for the ramble and if that doesn't make much sense, essentially just want to reassure people not to worry or feel hopeless because it's been X number of months or over a year or whatever - and Rosie your advice is great mindset is important in this (for sure not everything because the symptoms are real and not imaginery as some people might like to make you think), but finding a balance of activity and phasing things in is key to long term recovery and sustainability.

Thinking of everyone and hang in there,and for everyone visiting this forum I still refuse to believe that there is anything other than a bright and healthy future ahead - this is just a dropped stitch in life's tapestry and things will get better again, just wish it would come quickly.

Craig

I am having weird symptoms also. What were some of yours

Thank you for being here for all of us. I am coming up on year. I wish I would have rested more, but that is my fault. Mental fog is lifting, anxiety is starting to go down. Having vision issues that I hope will go away. Muscles are starting to not hurt as bad. Maybe I am on the way out of this.

Hi Brent,

It sounds like you are on the road to recovery, mine started out like that, the anxiety and depressed feeling lifted and the muscle aches are almost gone.

Hope everyone is feeling better soon.

Hi Brent,

Please don't be so hard on yourself, nothing with this horrible virus is your fault it's just the way it affects folk. You can rest now and that will help for sure, but don't beat yourself up like that because you didn't do anything wrong and you haven't done anything that will stop you from making a full recovery, please believe that because it's true!

Just hoping and believing as Mono says these can be the signs of recovery shoots with your muscles not hurting so bad - I definitely believe you won't have to go through another year like this one Brent without any doubt, and that you will start to see progress and the signs of real recovery - just hoping it comes sooner than later - I truly believe it will come so don't give up hope and hang in there! Thinking of you and hoping for a good day today.

Craig

Hi guys

I am glad to hear that you are feling better Mono and Brent. It is lovely to hear that you are seeing an improvement.

I have weird symptoms Brent too even now I woke up feeling like I am coming down with flu. No fever, just very sore neck and glands all over, throat, congested nose and headache.But I don't feel so tired any more. I have to take breaks and tbh I am not doing much at all. But I managed to run to the bus stop to fetch a phone to my friend and did not drop, when 2 months ago I could barely stand on my feet. I cam sit at the table without feeling dizzy. My apetite is better. Anxiety lifts now and again and depression too-I have moments when I feel OK. I even cooked lunch yesterday. Had to go to sleep after that but still. But at the same time I am achey all over, have headaches all the time.just this constant feeling of being unwell, particularly around nose, eyes and throat. It is very annoying but I am just hoping it will finally get better. I think that our immunity is shot just now and we pick up every bug there is.

And muscle, joint and bone ache seem to be a common theme too.

I hope you all will see much improvement in coming days. Thinking of you all.

Natalie

Oh, well I think it's common to have all kinds of weird symptoms while ill with post viral/CFS - google recovery stories from cfs and you'll hear about all kind weird things people had and then still recovered. Mine have included vomiting for months, nausea pins and needles in my hands, cramps in my hands, pins and needles all down left side, racing heart, feeling really dizzy and lightheaded when standing up or walking around, shaking fits, individual glands zooming to size of golf ball, pressure at back of head, pressure at top of head, feeling swollen all round left ear/sinus/throat. Weird looking tongue, left side tonsil swollen. Etc. It really can give you all sorts, poor body! But now I don't get any of those symptoms unless I overdo it! My limits aren't massive yet for what I can do but worth sticking to and gradually increasing little by little with the right treatment and I feel ridiculously happy just not to feel in constant pain and fear and be able to walk out for a coffee with a friend in the sunshine now! Got to celebrate the small things! X

Hi Brent. Oh and just to add I've had weird vision things too. Obviously get things checked out by the proper people, I saw a great optician who said I basically had like an 'eye cramp' thing where I wasn't always focusing properly because eye muscles fatigued etc. It was reassuring to know what it was, so if it happens I know it's a sign I've overdone it a bit and to rest more and pace myself better. Also I get really dry eyes and having some drops and a change to my glasses prescription have helped me too x

Thankyou Craig - you are really a star to be here so consistently for everyone with your positivity and your good advice. You deserve a medal!!

Ha! My left side of the face is a problem ever since it all started. Left eye, left sinus, left tonsil and left ear. Even glands on the left are worse😅 and i too have pressure in the back od my head and in sinuses and in the top of my head.

Yesterday I did a little bit more and today I feel all sore. So I am staying in bed with a book and will try not to worry.

Natalie

Xx

It's weird how it's all on one side isn't it! Do you sleep on your left side? I do; I wonder if the germy bits drain into that side when we're sleeping or something 😂 Not very scientific but who knows!!!

Rest with book sounds good. Have you tried halving your 'little bit extra' activity on good days until you can see how much you can do in a day without a crash the next day? I've got a bit naughty with doing normal stuff lately and having more good n bad days rather than all medium days - I need to get strict with myself again as I'm fed up of boring all day resting alone days!! X

Hi Rosie

I do sleep on the right side, at least this is how I fall asleep lol

My left tonsil was a nightmare though since the beginning of this infection and it sounds to me that it is a culprit to the left side face emergency...

I only just started getting up and about and still trying to gauge myself. I too tend to do too much and them crash. And i hate those crash days so much-they send me to a downwards depression. So I now what you mean

I try to get out from bedroom, get dressed in normal clothes despite of not going out. Today I did mega boring training unit for work and passed it. Despite of feeling awful-i think my daughter sold me a bug which is kicking about in her school.

I am trying to focus on my diet too. And positive thinking even when it is really hard.

I genuinely hate glandular fever though. It is now on the first place in my black book of enemies. Mind you I set it up only now-so it is likely to be one and only entry...

If I survive this, I can go through everything. I am just angry that this virus is robbing me of my time... instead of enjoyong life I am trying to keep my head above the water... but maybe each and every one of us has to go through something like this at some point.

Well done Rosie on taking such positive steps to make changes, I'm really impressed and it's you and everyone else on here who has been suffering with the awful symptoms that deserve the medal.

Still sending message of hope today that there is better days ahead for everyone - just in case anyone's having a particularly bad day, to remind folk that calmer times are ahead when your body and mind feels better - just concentrate on small steps and one day at a time when going through it is all anyone can do.

Craig

You are right . The small things are what matter at the moment, I must remember not to long ago I was afraid to even talk to people because of this diease shutting me down mentally. I still can't carry a conversation very long. It is crazy how mono can change everything about you. I use to talk all the time. It messes with every aspect of your being.

You are really tied into God. I have been getting real frustrated with life lately. This mono crap doesn't help. God always has someone ready to give words of encouragement. Thank you for being on this site. I want to thank everyone who is on this site. Some nights this is all I have. God uses people like everyone on here to help others get through one more day. I just keep holding on for better days.

Hi Brent,

This site got me through the tough times too, it is so hard for people to understand unless they have been through it.

One thing that I have now that I feel better  is a new appreciation for life, it is strange how you can feel the worst you have ever felt with no hope to a renewed appreciation. Hold on better days are comimg your way.

Hi Brent

You are absolutely right. This virus affects nervous system for sure. I constantly feel like I am in that state of mental fatigue. It is comparable to feeling very tired after a really hard day when you barely notice what is happening around you. You feel on that borderline of being awake and asleep. Only when you are healthy all you need is a good sound sleep and you are good to go again. With this virus the fatigue sometimes is less sometimes more but it doesn't lift completely. It is so frustrating.

And the anxiety!I know it too, all too well now. I am normally quite stress resistant, I like crowded places, I like people-I am a city girlI have a stressful job, in the past I have been lecturing and teaching, did presentations in foreign language in some far flung places and plane for me was always a relaxing place. Always sorrounded by people. And now?

The other week I went to cinema. I had a panick attack in the middle of a shopping centre. For no good reason. Out of nowhere. Me?panick attack? What is this virus doing to me? So I started feeling very uneasy about being out. The day after that I went to my daughter's school as have not been there for 3 months and I knew it was important for her. Same thing happened I did not recognize myself.

But I choose to think that it is not real me, I am still the same. My mind will heal just like a broken bone. And I am trying to fight this fear of fear that I developed.

This site keeps me sane too. Just when I think I cannot do it any more I come here and I find comfort in posts. And I am too grateful to everyone who is a part of this community. Everyone is doing a great job. I just hope we all will feel better soon and this experience will be like a bad dream.

I keep fingers crossed for everyone.

Xx Natalie

Hey everyone,

Mono is so right Brent - you will find a new appreciation for likfe when health returns again, and that is going to happen there is no question about that in my mind at all. Sometimes it's hard to believe it yourself when going through it I know that, so don't worry about that because I and others on the forum here believe it for you at this time - take some comfort in that if possible.

Thanks so much for the kind words - but they should be for God and not me because God is the one that gives grace and mercy and brings recovery - He is the one that offers hope when everything else around us seems to be telling us otherwise. He will bring healing for you I truly truly believe that so want you to try (hard hard hard as it is) to not worry and just trust that you're back is being covered by God - because it is He still has good plans ahead for you and that involves being in full health!

Natalie, Mono, Brent, thinking about you guys and just hoping for a good day today. Panic attacks are really frightening Natalie, it is understandable given the stress caused by the virus, but your confidence in everything will return, just a hard hard time just now but things going to get better for you I totally believe that.

Craig

 

HI everyone!

I've been reading all your stories, words can't describe how sorry I am for what you are going through,

We have good days, we have bad days... But we're convinced that we will recover, it might take a bit of time but hopefully soon we will feel good and healthy as once upon a time lol 😀

I wanna thank craig again for being a constant support for everyone out there!

P.s. Is it normal to get mild fevers AGAIN? Usually at evenings? Lasts a few hours... 😖

Natalie, my neck muscles... God, do I understand you!!!!!!!! Can't figure out if they're glands or muscles that hurt! Been having a very bad headache... Haven't had any for months. 🙈 sinusitis ain't going no where... And the very "loved" fatigue kicks back when you don't expect.

I'm sure when it's humid it gets worse, this is my experience tbh.

Oh it must be so hard needing to care for a child when ill with this...it's very impressive you're coping with that! I'm on my own which makes it easier to pace at least. Don't worry - there's no doubt you'll survive however unpleasant and scary the symptoms are at times. I've had a good morning doing jobs round house but just gone really lightheaded and so gotta lie down! The CFS team have me doing several programmed rests a day which I have to do irrespective of how I feel. Does help slow me down a bit when I start getting carried away doing things! I'm trying to see it as a learning process...how to look after myself better after prioritising 'everything but' for whole life so far!

Hope you're feeling better today x

Hi Rosie

Yes I know the feeling of making yourself rest. And so true it is that we look after everything else but us. I do have this problem. I think that this idea of programmed rest is good. How many times and for how long they tell you to rest? And is it like a proper bed rest?

Do you get this feeling of being half awake after doing things? I just feel that my brain is working on a percentage of its power. Like it is not sharp? I don't even know how to explain this silly feeling. It is annoying though!

I feel sorry for my daughter. I always have been an active momma and we would do many things together. Now I cannot. On better days I push myself so she feels not abandoned but on my worst day it is hard. I hope she doesn't feel ignored or resented

I am watching a lot of medical lectures now about fatigue and EBV and how stress, gut health etc is intertwinned eith this all. It does make sense to me. Not so.much to my GP but I am now trying to make sure I eat at regular intervals, abundance of veg and fruits and I drink lots of water. And I take supplements. And try to balance rest and doing something, as total bed rest drives me mad. Literally. Also trying to catch sun whenever I can.

I am glad you have support from CFTeam. I hope you will feel better and better!

Natalie

Hi Nicky

The neck! I have given up on deciding which part of it is causing me this pain. But it hurts😭i walk around wrapped in a scarf and i rub vapo rub to keep it warm. It helps a tiny bit. And I use a spray on magnesium too.

I too get headaches and I am sure at least part of them is because of the neck. Also I think my spine is not doing great because of lack of activity. I am thinking to start a yoga routine. Even for 15 minutes a day. Maybe it will help?

I had low grade fevers for first 3 months...it went down recently. We will see if it is something to stay. I too have the feeling of stuffed sinuses and nose and ears and face in general lol no clue why?

Also I do get heart palpitations now and again. No anxiety. I am not doing anything and my heart just skips a bit...sadly not for a hunky hero😜

I hope that you continue to feel better and better.

Natalie

Wow! I had the same thing happen to me. A couple of months ago I was in a movie and freaked out. I had a bad panic attack. I am a production manager and I am always communicating with different people. This stuff has made me have melt downs. It is slowly getting better.

Hi Nicky,

Thanks so much for the kind words, I'm really grateful. You really hit the nail on the head though that belief in recovery is there and it will come into manifestation - I just really want to reassure you that I still fully believe in your recovery without any doubt, and also that yes I believe the low grade / mild / running fever can be a common thing throughout. That was the thing that bothered me the most and made me feel horrible, and it is normal that this can persist but EQUALLY it's normal that it will go away and your body will feel strong again, so don't worry when it comes, eventually there will be a time when you just notice it's gone and it's not coming back the way it did before. It will be a great day to look forward to!!

Remember to speak recover in the present day, as though it's already happened or happening (that might sound crazy I know) 'I am healed because of God', even if you don't feel that way if you keep speaking it to yourself and trusting in God He will do marvellous things and most definitely gives us the real hope

Thinking of everyone and hoping for a good day for everyone today and remember there is an utter end to this, just hoping that can come soon for everyone and I do fully believe it will come for everyone here on the site, truly and genuinely I believe that (even if you're not feeling strong enough to believe it for yourself just now, take comfort that someone else does!)

Craig

Hi Natalie,

I do 4 programmed rests a day - lying flat with eyes closed - listening to guided meditations/mindfulness/relaxation. The CFS team said I could choose anywhere between 10-30 mins for them. I generally do about 15 mins - so only an hour a day in total and I quite enjoy them now! Sometimes I feel a bit reluctant, but I just 'notice' the reluctantness and do it anyway... I have alarms set on my phone to remind me to do it. It's much better than two days lying down which is what happens if I overdo it!!

And yes - I get the feeling of being not fully awake/semi conscious/lightheaded etc - always a sign that I'm tired from having overdone it! In fact all my symptoms seem to be to tell me that and get me to rest!! You sound like you're doing really well and have found some good positive resources online too - let me know if you've any particular reccomendations!

Rx

Hi Rosie

I too think that symptomps are there to stop us from overdoing.

I shall try your routine, i am guillty of going for a rest with a mobile or book. Lol. I guess it is not a deep rest.

I don't think I stumbled on anything in particular online tbh. Just read everything I could find but all is a bit wishy washy... the one thing I came across was that Vit D is suggested to stop EBV replication or at least to slow it down. As I have a deficiency anyway I take it quite religiously. And olive leaf, coconut oil, spirulina and 2mg of vit C a day. And magnesium and calcium- but that i take for tetany. However it helps immunity so probably works for EBV too. I know intravenous Vit C and B12 injections proved successful in early EBV but there is no chance that I will get this in the UK.

I wish there was a good source somewhere on this virus. It seems so underresearched

I hope you are doing good today.

Natalia x

HI Brent

I know-panic attack is so so scary... i am glad that you find it is fading.

I too have a job that requires constant contact with people. It scares me a bit how I will get back to my normal life

Natalie

Hi Rosie / Natalia,

Rest and meditation type activities sound good for sure, if you feel it helps you relax definitely do it! A good one that I find helps is even going onto You Tube and finding some healing words from God / healing scriptures to listen to whilst relaxing and breathing in too - there's lots of good ones on there with soothing music in the background and listening to those words about healing really helps and calms you down and gives you hope.

Thinking about everything and definitely for you both and Brent and everyone else on the site - there is a normal and healthy life ahead and you WILL get through this - I still totally believe in that without any doubt and that the symptoms will be banished, I thought the same that things would never improve at times but they did and they will for you too.

Craig

Thank you for the encouragement . I like the plan that Rosie has for taking breaks throughout the day . Does anyone know how long mono insomnia usually last ? I hope everyone is getting better and doing well .

Definitely good advice from Rosie to take breaks throughout the day - a day is a looong time when not feeling great so even a rest for an hour or two at some point during it is wise - finding a positive, stress-free routine that works for you makes such a difference, it can be trial and error with this and not easy always with the pressures of life, but remember looking after your body at this time is so important and giving yourself time and space to recover will make a huge difference.

I think it probably is different for each person Brent about insomnia, I would say that the more you find a settled routine and reduce stress (easier said than done given the virus itself causes stress!) then there is a greater chance of things settling down. Maybe trying some calming herbs might help, or doing something relaxing before bed like a bath with epsom salts in it.

Hoping for a good day today for you and everyone and thinking about you - remember that today is another day away from the day of infection and another day towards full recovery - still believing that God will bring healing for everyone reading this.

Craig

Today I got my blood work results, guess what? Nothing, everything in the normal range, I also got tested for hepatitis and Hiv, negative.... Urine and stools exams were negative too... I also did an ultrasound examination of liver spleen gallbladder... All normal.

Glad to know all this, but still clueless... Nothing explains the intermittent fever, dizziness, Orthostatic hypotension, fatigue... 7 months so far 😁🙈 I just know one thing, patience is the key even though your life is being torn apart, no social life, your position at work is in risk, your girlfriend leaves you because you're a snail 🐌 can't put on weight at all and it feels like you are not going to feel like before... Sometimes I ask myself what wrong I did to deserve this...

Sorry I'm just down again 😢

Hi Nicky,

Sorry to hear you are feeling down! I truly believe that you need rest for your body and constant emotional support! You need to be told several times a dayday that you will fully recover and feel well again! Because by God's grace you will !

Eat some energy foods. Eat foods that taste good to youme. Please give these thing a try for a month and see if you improve.

Prayers, Rhonda

Hi Nicky

Sorry to hear you're going through such a hard time with it at the moment. It will improve though - I've had it for over a year now and have improved massively compared to where I was at times and you will too. It's really hard to see the positives sometimes (I actually cried when I was told in Feb that I didn't have the - potentially fatal - disease that doctors had thought I had) but negative tests means you don't have a lot of nasty things, some of which aren't curable, so as slow and frustrating as limping back from post viral fatigue is, at least we will get better, even if just 1 percentage point at a time.

I'm sorry to hear about your partner - but if someone doesn't support you when you're down then they are probably a prospect you are much better off without in the long term!! Being ill has defintely made me reevaluate my priorities and draining, negative and/or unsupportive people are definitely out!!

None of us did anything wrong to get this, but - for me at least - it makes it a little easier to bear if some silver lining of learning self-care and which relationships are the good ones etc comes out of it. I don't know if any of that is of any comfort but just wanted you to know that you aren't alone with it and, yep it absolutely sucks, but there will be light over the horizon 😊

HI rhonda,

Thanks alot for your support, I'll try to add some of my favorite foods in my diet, hopefully they can change my mood 😢

Thanks again, I hope you're doing better! Prayers, niky

Hi Nicky

I am so so sorry that you feel so rubbish! I don't have any good advice but I am thinking about you. And hoping that you feel better very soon.

Take care Nicky! It will get better.

Natalie xx

HI rosie,

Thanks for your support, I do appreciate that you take your time to make me feel better, positive words from those who have suffered definitely helps alot in hard times, can't agree more with all that you mentioned! Totally true!

I've thrown away unsupportive negative people from my life too, too much time and energy left for ungrateful elements... I try to evade stress as much as possible, I've come to the conclusion that stress drains my energy aloooot like I can't stand on my feet, even though it's not that easy but I'm doing my best.

I hope you're doing good, prayers!

Thinking of you Nicky (and everyone), it's so frustrating I know, just hoping that better health and new strength can be on its way, I do believe that, I know it's hard to see right now - hang in there and thinking of you at this time. You WILL get better, even if you don't feel strong or optimistic about that at the moment, I truly believe that.

Just take things slowly and don't put too much pressure on yourself

Craig

Hello - not at all. Just wanted to add as a 'ps' that one thing that kept my spirits up when really poorly was listening to recovery stories/experiences of those who've recovered from CFS online (there is a lot more info on cfs rather than post-viral/long term Epstein Barr/mono despite the overlap in symptoms/problems) for tips and to keep the belief going! People much more ill have recovered! There are websites and videos - if you've not tried it I recvommend it!!

HI Natalie/craig/rosie!

thanks alot for your words 💙

Glad to be able to share my story with you and read about your stories! This does help me tbh!

I hope everyone is doing good!

Take care, prayers!

It stinks having this illness. No one understands. I have tried explaining how I feel to people and they think 1 or 2 weeks and you should be better. Not the case for everyone. I hope you and everyone on the site feels better.

Thanks Nicky,

Most definitely thinking about you and everyone else on the site. Just wish it wasn't so hard to deal with this virus and everything that goes with it. Still trusting and believing in a full recovery for everyone here, I know it's hard to see right now but let's hang onto that hope and belief today - recovery is happening right now for us all.

Craig

HI brent,

Totally true, possibly one of the reasons for which I feel down when around others... It's amazing that your blood works are always good and no sign of inflammation or infection is seen... " Just chill" that's what the doc told me this week!

HI craig,

You're just full of the positive energy that we need!

Whenever I feel sick I remember what you all repeat all the time, sooner or later it will be over!!!

THANKS

Hi Nicky,

Thanks so much for the kind words, but I take strength from the words of hope and encouragement of everyone on here - especially those going through the virus because I know and remember how tough a time it was, and I really just want you and everyone to be feeling better, I do still fully believe in your recovery Nicky, truly and honestly and please don't lose hope, because I know it's easy to when it constantly tries to beat you down and when it goes on for so long.

Thinking of you and there definitely is hope and recovery out there, so frustrating when you feel so horrible and the blood tests don't show anything (not that you want them to show anything serious but even just a mild explanation might be a comfort in a way). But do take it as reassuring when the blood tests are okay, it's normal and it just means that your body is still recovering post-virus, which takes time but it DOES recover and you WILL regain your full strength and health again - hold onto hope in that, I believe Jesus will bring healing to everyone here on the site.

Craig

Just want to say thank you again for being here for everyone. My days are getting some what better. Doctor gave me some stuff to help me sleep. Still have some aches and pains, but that is probably from doing too much in the yard. Vision has been getting better and brain fog is starting to go away some. I am able to talk to people again somewhat better than several months ago. Still afraid of cfs. My doctor told me to keep moving and working and not to be complacent. He is positive that I will be 100 % again. It has been a rough 12 months with this virus. I have some days that I can smile. Rough in the mornings though. unrefreshing sleep makes it hard to get going. Maybe it will get better.

Hi Brent,

It is good to hear from you and that things have improved and are on the right road. That is positive and take that as really encouraging! Definitely want to reassure you regarding CFS, please don't worry because it's a gradual process your body regaining full strength and health again, your doctor is right you will be 100% again I truly believe and want you to know that I am thinking about you because I remember how tough that 12 months was for me - but BY FAR you are through the worst, Jesus will continue to work and bring healing and just want you know that we're all rooting for you and believing in a total recovery for you Brent.

Hang in there and keep in touch.

Craig

Hi Brent,

It sounds like you are on the road to recovery, The mornings are the worst, but even that will eventually go away. All the best. 

You had morning issues also? I feel terrible in the mornings . It normally gets better in the afternoons. I am having problems with fever whenever I go out and do stuff like shopping or running errands . Is this normal ?

I've always found mornings worst when going through difficult times, emotionally and physically. It's also normal that when you start to do more activity that you feel the fever running, it's a horrible feeling and again just your body telling you to be careful and slow down a bit maybe when going through this.

But key thing to remember Brent is that you won't always feel this way - it feels never ending I know and I know you've been through a terrible year with it and you're weary - but I still fully believe that new hope and new strength is on its way to you thanks to God.

Thinking of you and hoping that you are doing well also Mono - hang in there guys.

Craig

You have really helped me . Going through a divorce and catching this virus has really taken a toll on me. Sometimes I do feel like giving up . I have been sick for so long. I am hoping that it will get better. Having to work and rest when I can has been hard .

Hi Brent,

Yes, I always felt worse in the norning,I feel better now, but am still low energy in the mornings. I haven't had the fever part, my temperature has been low through this whole experience. Check with the doc about the fever because this does leave you vulnerable to other viruses.

Hi Brent,

Keep hanging on and don't give up, I know it's hard when you're so tired and weary. And not giving up doesn't mean to say you need to be out there doing things at 100 miles per hour, sometimes it means being wise and resting, just not losing hope. There is always hope because of God.

I do believe you're much closer to recovery than you think. It happened with me that I struggled for so long not seeing much change at all, it really does mess with your mind and makes you feel like nothing will happen, but there seems to be a 'switch' with this virus that all of a sudden things can leap forward in quite a short space of time. I still fully believe that time is going to happen for you and that it's not far away. Just hang in there, the stress of divorce and other things in your life might have prolonged things because stress is a huge contributing factor, but it doesn't mean in any way that you won't recover because you definitely will - key thing now is just to get your body as far removed as stress from possible (hard as it is because I know the virus and feelings themselves cause stress), and just take things one day at a time - don't look beyond that, it's the only thing to do when going through that because I know how hard it can be to cope with each day when feeling like that. It's an achievement to get through a day and don't be too hard on yourself.

Thanks as always for the comforting words Mono - you really are a wonderful blessing to this site and have really been helping people so much despite going through a tough time yourself - you reall have been amazing!

Thinking of everyone here, today is a day of hope for us all!

Craig

Did you return to your normal self? 100 percent? I am holding on to your words of hope. Right now that's all I have is hope.

Hi Brent,

I feel about 95 percent myself, some days are low energy, like today but my mom and daughter had colds this last week so I am hoping I am not coming down with that. You sound like you are pulling out of it. I know that it doesn't happen overnight but the symptoms go away one by one and then one day you recover. All the best to you.

Hi Brent,

Yes, I would say I returned to virtually 100% - thanks to God - and you will too, without any question at all in my mind. There is hope today because of God. Sometimes maybe an ordinary cold or whatever hits you a bit harder for a while after the virus, but nothing major and generally speak once your body resilience starts to come back things will be much easier to cope with.

Remember place your hope in God - he's the one that heals and there's no way you will have to go through another year like the one you've been through - you've weathered the worst of the storm, but recovery takes time you're body has taken a battering so just let things happen at their own pace.

I TOTALLY AND FULLY believe you will make a full recovery Brent, and it's understandable that you don't feel optimistic about that now going through what you're going through, but take heart that someone else believes it for you and has the faith for you even when you don't feel strong enough yourself. Everything will come back to you, I trust God with that!!

Mono is right - recovery takes time but recovery does and will return, even after a prolonged period that will most definitely happen - remember to take vitamins / herbs and find a stress-free routine with fresh air, short walks, things that you enjoy without taking too much energy out of yourself - all these help with recovery.

Hoping for a good day today for everyone on the site.

Craig

Thank you for your support. I will keep holding on ,

Thank you for your support also. Keep me in your thoughts and prayers.

Definitely keeping you in my thoughts and prayers Brent - and remember you will get through this and will get better (even though it doesn't always feel that way), recovery is happening and you will see the manifestations in Jesus name.

Craig

Hi Path,

How have you been?

Hi Natalie,

How are you feeling?

Hi Mono

Well I was quiet last few weeks as I did nt want to jinx anything.

About 4 weeks ago I woke uo one day feeling able to actually do something.

I would still feel tired after but I was able to go through activity.

Slowly I started doing more and more. Nausea is gone, ribs don't hurt anymore, headache dissapeared. Energy lelevs i would say 50-60% of my normal self. Still get tired fairly easily. Brain fog is still with me more than ever. And low mood too.

However I am functioning much better than few weeks ago and for that I am grateful.

I hope that you guys are doing better too. From comments I can see some progress

Hi Natalie,

So glad to hear you are feeling better, I am too, I think I am fighting a bug at the moment so trying to stay positive, this virus always has me looking over my shoulder.

Great to hear things are improving Natalia, just hang in there things will continue to get better I truly believe!

Thinking of you still and thinking of you and your daughter too Mono, still fully believing in your recovery without any doubt whatsoever.

Craig

P.S. Remember God heals in Jesus name, He will give everyone on this forum struggling with glandular fever / mono brand new strength - I believe this fully.