Not yet diagnosed properly

Hi Rosie,

How long have you been sick? I am feeling a little better this week, but concerned for my daughter who has been sick for nine months with no end in sight, I love the recovery stories, as it gives her something to look forward to.

Hope you are feeling better soon Craig.

Hiya

Ah, well it's kind of a long story - I first got sick March 2016...but struggled on with work til the summer when I got much worse. Had a few months off and gradually built myself back up and returned to work for a few months...then crashed again and have been gradually rebuilding again since April... so it's been 18 months but with a few months of semi-normality in there. Was doing quite well until the anxiety coming back recently... it's a tough old business unfortunately. I think my body has had such a tough time with it that it's become sensitive to the smallest stressor. Is your daughter getting any help or advice? How old is she? xx

Hi Rosie,

She is 27, she tested negative for mono and then about two months ago she tested positive for Epstein Barr, we knew she had it because she had all the same symptoms I had, the doctors just tell us rest and fluids, I sure wish that there was a medicine for this awful thing, What advise have you been given?

Yes a medicine would be great! Well - apologies in advance if the idea of this is worrying but it's actually not as bad as it initially sounds - if you've had a viral illness that carries on for longer than 6 months then it can officially be classed as chronic fatigue syndrome (cfs). CFS is something lots of people have to varying levels and lots of people recover from with the right strategies, there are a ton of recovery stories online. The effect of long term mono/Epstein Barr is the same. The advantage of the diagnosis is that there are some support services that can be accessed and also a lot more advice and info online and also your job have to make reasonable adjustments for you because it's classed as a disability (though one that you'll get over). The latest theory of CFS is basically that your body gets stuck in a 'fight or flight' mode so because it thinks you're in danger it is constantly exhausting itself and so you have to use lots of relaxation practices and very very gradual increases in activity, avoid stress etc etc so that your body can learn to relax, heal and rebuild. Apologies if this is an onslaught of information - I've done a lot of research in my mission to recover!!!

Hi ROsie,

Yes, I do worry about this possibilty, I am self employed and my daughter is employed, however the doctor didn't mention anything about disability, which I have heard is very hard to get.

I think you are right about fight or flight response as it does seem to cause anxious feelings.

Did you have Epstein Barr?

Disability benefits you mean? Yes I think they're very hard to get, which is part of the stress about returning to work I think - feeling like it HAS to work. But I'll cross that bridge IF I come to it I guess. I just meant disability in terms of employed having to help with a phased return etc. I actually asked my GP for diagnosis because I'd found out there was an NHS cfs service in my area that I wanted to access.

Yes I got Epstein Barr at the start of it. Try not to worry about your daughter getting cfs. Cfs isn't an 'illness' as such - just a label for people struggling with their health for more than 6 months after a virus. How much is your daughter able to do at present?

Hi Rosie,

She works full time and just goes to bed ill  all other times, she has worked through her whole ilness poor thing. When did you notice a change for the better?

Wow! There's a lot she can do then, that's positive, although I can relate to the 'no life outside work' bit as I did that March - June last year and I know how frustrating and depressing it is so I feel for her!

If I'm honest, I didn't start improving til after I'd taken time off sick, but I had a few complicating factors (huge amounts of life stressors going on).

After that it took about 3 months to build myself up, though I certainly wasn't 100% when I went back to work. I wish doctors had a better understanding of cfs as I would've done things very differently sooner with the right advice. Has your daughter had a lot of stress or anything or just the Epstein Barr? Is she able to go for walks and get social support?

Ha 'just' - I know that's more than enough!!)

Hi Rosie,

No walks unfortunatly, she used to be a runner, so she would love to be able to go for walks ect, no real stress other than the virus. We have always been very healthy, so it is a whole new world with this virus. She has great family support, I am glad I had it, it makes a person much more sympathetic having experienced it and to be able to let her know that she will recover.

That's great that it's the one thing to deal with. One of the problems with the virus is that you can lose a lot of physical fitness. One of the main strategies that got me building up was graded exercise. You start on what you can easily do e.g. For me 10 mins at start (and on a non-work day) and then you add 10-20% every week or two. Soon I was walking 3.5 miles a day and the physical fitness builds up ability to cope with work and then general energy improves and virus gradually disappears.

I also almost got better a few months in by eating well and resting enough, but then I did too much as soon as I felt well visiting friends all over the country. So I'd say be wary of the temptation to do that and if she's willing to do mindfulness/relaxation exercises that helps more than just lying down (I hated that sort of thing...but have got used to it now as I had to try it as I was willing to do whatever it took to get better). If she has the money then relaxing treatments like massage are great - people can come to your house n do it and it's a nice treat to lift spirits when night's out etc are off the cards!! Best wishes to her I'm sure she'll be right as rain in a bit xx

Thank you, Rosie. She does the guided meditiation while resting and massage, sure hope it lifts soon.

That's great, sounds like you're both doing all the right things and that she'll be better gradually over time x

Hey Rosie / everyone,

Just want to let you know I'm still thinking about you all, just so sorry it's still been so tough for you Rosie and Shabby and also Mono and your daughter, I know everyone is weary here having suffered for so long with the virus, tired of battling. Remember though battling doesn't mean you have to get up and fight through every day, battling can be just resting too and giving your time body to recover.

And without any doubt for you Rosie, for you Shabby, for you Mono and for your daughter Mono, I still FULLY believe in a 100% recovery - it doesn't matter how long it's been going on for, how low things seem right now - recovery is definitely happening and you will see the manifestations of this in your life, I truly believe that and hold onto that hope, even if it's hard to do that whilst feeling so weary, take heart that someone else believes it for you, and that God's will is for you to be in good health again - and you WILL.

Thanks for the best wishes for my back too Rosie, I really appreciate it and it means so much.

Hang in there everyone - better times on their way.

Craig

 

Thanks Craig!

Absolutely believing that I will get better, you're right!! I liked your message above about the virus and antibodies changing shape! It's just a matter of when so all we can do is try n help support our bodies as best we know how and relax into the healing process... And all the others too! Including your back - hope its not giving you too much pain.

Rosie

Thanks Rosie, I believe that too for you without any doubt! It's hard when going through it to feel strongly that way I know, I'm finding it hard just now too with my back but we will be healed thanks to God I truly believe that!

I find your words and the support of everyone on the forum uplifiting, thanks to everyone and still thinking of everyone today and believing in complete recovery from this awful virus.

Craig

Hi everyone

I though that I would give you an update about me. Got mono in March. Started feeling better in June.

I started a phased return to work this week.

What can I say? I am not as ill as I was any more for sure. But my energy is nowhere normal, i am lethargic, sleepy, tired, suffer from brain fog, now and again I get sore throat and glands hurt me. I find that I am very sensitive to weather changes now. And my mood is still a major issue.

Main difference is that I can actually walk far without dizziness and feeling fainty.

I hope you all are getting better. I am sorry to hear about your back Craig. I hope that you will get better soon.

Hugs to all xx

That's great Natalie - I'm glad things have improved for you and I'm sure that the remaining symptoms will gradually fade away with you taking things slowly and carefully like you obviously are x

Thank you, Craig. I was feeling better and now at 10 months feeling ill again, not as bad as before but still down, I hope you are feeling better.

Hey Natalia,

It's great to hear that things have improved, albeit frustratingly slow I know! Full strength and health will come back to you again in time, it takes time but don't worry because your body resilience does come back bit by bit over a period of time - until one day you wake up and you realise you just feel normal again. Thanks for the kind words for me about my back I really appreciate it means a lot!

Same will be true for you too Mono, it's been an awful time for you and your daughter and want you to know I'm thinking about you, and that there is an end in sight, there really is. Hang in there, you too Rosie thinking about you all.

Craig

Hi Everyone, just an update. I am better but continue to battle with fatigue , muscle pain dizziness and appetite . Am grateful for improvement. It is easier to deal with as all symptoms are less intense.

So sorry Craig that you are dealing with back pain. Thanks for your faithfulness to encourage each of us.

Praying for each one.

It seems as we improve and try to return to activities of daily living our symptoms try to return that weI thought were gone.

We will all fully recover! Thanks to God's grace!

Hugs to all! Rhonda

Thanks for your marvellously uplifting words Rhonda, it is a real battle I know but you will get there and the enemy will be kicked into touch for good with this virus - it knows it's beaten and it's going to give up and then full health and recovery will be there thanks to God!

Thanks for the best wishes about my back, it means so much Rhonda and your prayers really mean everything to me at the moment.

Thinking of you and still fully believing in your total restoration and recovery - truly I believe in that for you Rhonda, thanks to Jesus.

Hugs also to everyone!

Craig

Hello everyone,

How are you all doing? Any improvements? Craig how is your back?

I hope everyone's doing better, as for me, I'm doing good, not as normal as i was back in november, but im grateful that i can do more, even though i kind of easily get tired, this hot weather is not helping me with my mono at all, i have some great hours then i really get so lethargic... Mostly because of the weather maybe? Cuz when it's chilly I feel better, I still get those low grade fevers that last from a few minutes to 2 3 hours... And I've been struggling with insomnia again... It's been a week or two...this is the worste thing as you can't recover at all.

Let me know how you all are doing! Thinking about you all! Prayers.

P.s. Thanks craig for being always there for everyone!

Hi Nickyyy,

remind me on how long you've been suffering?! I'm in month 9 now.

i have definately seen improvement these last two weeks, still tired and have a nasty sore throat etc but def slow improvement. Its raining and chilly where we are so the weather is ok for me, however we go away on hols to a hotter climate tomorrow and I think I'll just be able to manage  the journey. I'm hoping so.

we are getting there slowly, I know we all are.we will all recover. Craig I hope your back is improving.

x

 

Hi Nickyyy,

I am better than I was. I have had lack of appetite and feeling tired again, like a mini relapse. I guess I tried to jump back into life to quickly.

Hi there,

Yeah i got sick on 16th of november! Been a long journey, the recovery process has been quite slow but in the last 4 weeks, I'm experiencing a much better health than before, like one day i woke up and i was like um, am I not sick anymore? I miss rainy days, havent seen rain in like 3 months. Lol.

Overall, its getting better, the hardest things are long flights. I hope your journey goes well! Enoy your time!!!

Hi mono,

I'm glad that you've been doing better, this is great news!!!

tbh I've done this mistake too, but you know, we're just trying to get back to our normal life and enjoy it amap... But, i need to mention that i no longer feel sick for days if i do a lil bit more, im trying to balance everything though not being able to sleep well doesn't help me at all.

Oh yesterday i had my beer for the first time, i drank like 100 cc? Not too much right? God, it made me sick for hours 😂 no beers for me anymore... Just wanted to enjoy my time with friends):

Q

Hi Nickyy,

yes, definately better health with me in the last two or three weeks too.

2 hour flight, so hopefully I should be ok?? Has worried me somewhat.

Hi everyone,

Thinking about you all, sorry haven't fully caught up with all the messages yet, but just to let you know still thinking about you. Still having a hard time with my back unfortunately, please keep me in your thoughts and prayers also.

Everyone on this site is going to get there and get over their pain and struggles at the moment, rest assured I fully believe that and if you are reading this then that's the message to take on board today. Hang in there everyone, I know how tough it and trusting in God to help us all.

Craig

Hi,

Glad to know you've been better in the last two weeks.

I don't think a 2 hour flight would have any bad effects on you :D!

So, I hope you enjoy your flight :D :D :D

 It is really weird .  I have been having the same problem when it gets warm also .  It feels like I am having a fever it last from 2 to 3 minutes to about an hour also .  I do better when it is cool outside . The insomnia is getting better.  Dr. prescribed a medicine for sleeping .  This is a weird disease and I weird virus .

Hi all, definately a weird virus, really nasty. I made the two hour flight and I'm feeling really good so far..... Relaxing and having really good days! So now I'm thinking is that it? Is it going or do I prepare for a low again?! Plays with your mind.. 9 months, I'm hoping it's the last stretch?? 

 

That's great! Happiness and relaxation are really good for the immune system so try to embrace the moment and bring home some of the holiday feeling with you!

I have felt better the last two days, trying to think positive, but preparing for a low also..It really does play with the mind.

Hi brent,

Lol, so true, I just got the same symps...and yeah, when it's hot I feel  like I got no energy and so lethargic, but then when it gets kind of chilly I feel much better. I'm not taking anything for my insomnia though, I've been able to sleep more during the last two nights, maybe because it wasn't hot? probably, I have no scruple to associate my symps to the weather. this virus...weirdest thing ever happened to me!!!! 

hi!!!

Glad to know that your flight was great and you felt nothing bad at all! just enjoy your time :D :D :D

Recovery is NEAR!

Ahhhhh thanks Nickyyy, 

i feel feel amazing on this holiday, it's just incredible! Yes, hoping it for all of us that it's over. Xx

Hey everyone,

Really hoping this is the final stretch Caroline, Nicky, Rosie, Brent, hang in there. It sure is a weird and not nice virus, it tries to bring you to your knees but it won't succeed, there is recovery for all of us keep hoping and keep believing - easier said than done when in the throws of it I know - but I still believe in everyone's recovery, struggling a bit myself just now so keeping everyone in mind and I know what it's like, just hoping better days are on their way very soon!

Craig

I hope you get to feeling better.

Ah Craig it doesn't seem fair that you're in pain when you're so supportive to everyone suffering on this board! Have you come across Nicole Sachs on chronic back pain on YouTube? May not be of any relevance to you but thought I'd mention just in case. Hope you feel better soon.

hi craig,

I'd love to help you, I as a physio ve almost everyday have patients who suffer from back pain, too bad you're nowhere near me,

I hope you feel better, remember that moving is the key!

Hi Nickyyy/Craig.

thats exactly How my mum managed her bad back a few years ago. She would just have to rest frequently but not for too long or it would seize up.

id love that job as a physio.

take care Craig.and everyone x

hi there, 

yeah , in fact people think that resting ( it's as bad as sitting for hours) more may help which is unproductive and can lead to more issues, those tissues need oxigen, in order to get it we need to move :D lovely job, satisfying, tho not so easy when struggling with this nasty virus.

Hello everyone

I was wondering how you are doing!

Any improvements?

I still can't figure out what's going on with my digestive system! I've Been having loose stools for about a month! Maybe a low grade fever too!

I'm so tired of losing weight constantly! I'm not absorbing food hence I feel so wrecked! Do you think i should take en zymes for a while?

Hope you are doing better!

Ah you have my sympathy - the digestive side is tricky isn't it! Just wanted to check you've been tested for digestive stuff e.g. Coeliac, h.pylori etc before you go down the self-management route?

I've started doing a teeny tiny bit of work again (phased return) waa hoo! Feels great after months off worrying about health, fingers crossed it continues 😊 

Hi Nicky,

If you're taking any vitamin supplements it could be affecting your stools, but definitely worth seeing the doctor about for sure and check out if losing weight. It's horrible I know, thinking about you and just hoping things can settle down and stabilise and improve very soon - I still truly believe that will happen, hang in there.

Craig

Hi rosie,

Woah, thats great! I can feel your energy from here!! hopefully it will continue.

unfortunately I've lost my spirit and energy again!

Lol yeah, well i had stools exams 2 months ago, no plyori fortunately!

I'm sure there's something wrong with my bowels 😞 I've already lost 25 pounds cant afford more!

I was doing great (digestive system was doing great for 3 months,had started eating too much just like before November 16th 2016, I felt great because I could give me more nutrients by eating more)... But now again I feel like whatever I eat it makes my stools watery!... I feel weak because im eating just toasts decaffeinated tea yogurt and white rice! I've been having nausea too, I'm having too much stress for a couple of events in my life, this is not of a help at all.

Can't visit my doctor because I'm away 😀

hi craig,

thanks for your reply, how's your back? I hope youre doing better!

I'm not taking any supplements tbh, I stopped taking supps 3 months ago, 'Cuz I felt there was no more no need for'em. Unfortunately can't go to my doctor 'cuz I've moved to spain to a friend! 

I really would like to see if my pancreatic enzymes are normal or low

Thanks.

Hi Nickyyy,

I understand this feeling May and June were good months and then the last month has been up and down, my appetite is not good and the nausea is back. I notice the down feeling and nausea/lack of appetite  go hand in hand. ugh!

Ah okay Nicky....hope that you manage to get to see a doctor at some point definitely get registered if you have moved to Spain that's important you have someone you can go to. Hopefully the climate there will help you, I definitely think it will!

Still having a tough time with my back at the moment...thanks for asking...will keep trying though and will get there with God's help I believe.

Craig

Ah thanks that's sweet :-) yeah I've got to be really, really careful or I feel horrible again, but it's a start!

Hm shame about doc - it probs is the stupid virus but if you can get checks it sounds a good idea once you're home. I had terrible nausea/gastro issues too but it settled down with gentle diet etc mostly.  I've heard that a probiotic food kefir can do amazing things to sort gastro probs - I haven't tried it yet but would like to. Also hope you're getting support for stress you're going through :-)

Hi mono,

Yeah you're so right! I hear you there, these ups and downs... Nausea... Feeling down... Not being able to enjoy your life... It's just too much, every time i feel good then some new symptom comes up, just fed up!

Is your daughter feeling better?

Hi craig,

Well I'll be here for a few more days then move to sweden... My life has been through alot of ups and downs lately, so stressed tbh!

I'm so sorry about your back, have you gone to any physios? Acupuncture? Or ozontherapy?

I really hope that you feel good asap.

H ell yeah I'm a big fan of kefir, I drink it almost every other day! however it's not been helping me with my gi issues!

This is the second time that I've these issues but the other time it wasn't as bad though! Yeah, ebv is just so unique, in a very negative way 😀

Thanks alot, that's a very nice of you (:

Hi all,

i had a holiday in Italy a week ago and it was really good for me, been back, only had one day of low mood/tiredness in bed and slowly been building up again. So (I hate saying it as when I do I get worse) I'm feeling good at the moment.

ive only GAINED weight through this whole experience... I get the nausea but I can eat no probs!

wishing you all well and healing thoughts

caroline xxxxx

Thanks Nicky yes trying lots of things to help my back....hoping that things will improve hanging in there.

Good luck with the move to Sweden, hoping things settle down for you the stress can have a lot to do with the flare ups too...once things are settled I feel certain you will see more balance in everything again so just keep going and you will get there!! I truly believe!! Thanks so much for the best wishes I really appreciate it means a lot.

Craig

Hi Nickyyy,

​My daughter is still feeling terrible, she has had a few days where brain fog has lifted though, So we will take any positive sign at this point.

Hi mono 

Just wanted to mention this in case it helps. If your daughter has a good/brain fog free day, have a look at what she did during the previous 24hrs.  

I used to get really confused why brain fog would pop up the day or two after I'd had a much better day and had thought I was getting better. Turns out it was because I was doing more on the good days, leading to brainfog/symptom increase from fatigue the next day.

 So if you have a better day, try looking at the day before to see the level of activity that your body CAN tolerate while it is building strength back up.

Then you can try to stick to that level and just build it up a tiny bit as you build strength.

HTH

Rosie

Good advice Rosie....those symptoms must be so hard, just wanted everyone to know I'm still thinking about them today and fully believing in everyone's recovery today - God is with us. Hang in there, I know it's so so hard, I understand the pain really do.

Craig

Hi Rosie,

i think that is really good advice too! I seem to be getting better, the days when I feel more tired and worse is when I've don't 'too much' the few days previously....isn't it hard to not get carried away! 

I almost pretend I'm normal when I'm feeling good and forget im still recovering from gf. I try to relax as much as I can.

Hi Rosie,

I will tell her, I find this to be very true for me. How have you been feeling?

Hey - I'm ok thanks, inching along but doing more than I used to, though a long way off what the average person can do still, but going in the right direction at least so I try to focus on the positives! Been doing a little bit of work at home for a phased return which is good  :-) best wishes to you and daughter 

Hi Rosie,

can I ask how long it's been for you now?!

i feel exactly the same as you, inching along, doing more, but way off what I used to do!

its 9 very nearly 10 months for me.

caroline.x

Ah, well please don't assume that it'll take you as long as as me - I had a couple of major relapses following being treated wrongly by doctors for an unrelated prior health condition that is usually no problem.  

But to answer your question - it's been 18months for me now. To cut a long story short I carried on working when unwell for several months after my first week with the virus, then got much worse had to be hospitalised and then couldn't work for a few months but gradually built back up by Christmas to semi-normality. Then had the major relapse and have spent several months trying to get well enough to return to work which I'm just doing now, but it's definitely harder and slower this time but hopefully more thorough and my understanding of managing it is better now so hopefully it'll all pay off in the long run :-)

Oh my goodness Rosie,  that has been truely horrific for you. I am so sorry. But how amazing to think how much you have been through and you have fought all the way back to really seeing normality, I know it's inching along, but you are getting better!! And will be normal one day. I feel better mentally, probably because I am and very slowly seeing the end of the tunnel. I hope there is no crash at the end of this good bit for me. Sending you healing wishes Rosie xx

Thanks that's really kind :-) Yes luckily I'm a very determined person and have decided I'm going to get better so I will keep plugging away! I try to think of it as a life lesson to reexamine my priorities as I have always worked too hard and put a lot of pressure on myself so now I am being a new zen person & taking care of myself that would've got on 'old me' nerves no end 😄

Ps healing wishes to you too - you will be absolutely fine - just keep respecting what your body tells you and your strength will go up & up x

I love that, and such a positive and brilliant way to think about it. I have 'let go' with certain things, and I can't worry as I can't do anything about it, laying here! But being positive must help. Good for you. Positive thinking is amazing.

x

Hi Rosie,

​My thoughts exactly, the old me was very work oriented and never took time off for herself, this virus has given me a new outlook and gratitude for health that I used to take for granted.

Great words for sure Rosie....echoing those sentiments about sending healing wishes to everyone on the site here - still thinking of everyone each day.

Craig

Thanks Craig - and to you and your back! I'm sure you're owed some good karma after all your support to everyone on this board!

hello beautiful people,

How are you all doing? Hope you're having a good weekend!

My digestion is improving as I've stopped eating raw fruits, Eating alot of yogurt, white rice, chicken soup with cooked veggies! I take herbal Teas 2 3 times during the day ( Ginger, Mint leaves, Fresh Lime juice, Honey, Green tea or De-caffeinated Tea, horse-tail etc ).

Anyways, I'm still so tired, it seems to me that I have a low grade fever several times everyday, lasts from a few minutes to maybe an hour or 2, can't figure out why...

10.5 months...Sometimes I have tender or swollen lymphs under my jaws, around the neck or around my groin...constant stress has become a trigger factor of my mild symptoms.

Do you still have tender lymphs? what about this fever thing? so annoying as it wrecks you!

Overall, feel better than 3 months ago.Improving by slowly. not bad at all.

btw, mono i'm so sorry for your girl, I hope in a fast recovery!

 

I meant daughter! sorry.

Hi Nicky,

these last four weeks have been improving, but these last few days have got just that bit better. I've still got burning thighs (at night) but really good improvement, even had another little swim today!! 

Glad you are seeing improvement too xx

Hi Nick,

​She had a few good days last week and then two days ago started feeling terrible again, I wish I could trade places with her. She has always been so fit and healthy.

This virus is terrible, but hopefully the immune system kicks in soon.

 

Hi Nicky - glad things improving. Ginger tea is great for me too. I suffered from something called viral gastroparesis (basically temporary gastroparesis caused by darn Epstein Barr) and the diet for gastroparesis was an absolute saviour. I just mention in case helps as some similarities with what you're eating (low fibre, low fat, semi-liquid, small frequent quantities). I didn't have diarrhoea tho so maybe different. 

Can't help on fever I'm afraid as I haven't suffered from that fortunately, but yep my glands swell up after overexertion or stress too. Guess there probably isn't much we can do about that other than rest enough and do relaxations.

Still got fingers crossed for you all to feel better soon!

Thank you so much Rosie....sending you best wishes too. Thanks also for the advice about Ginger Tea something I will definitely keep in mind.

Yes Nicky the tender and swollen lymph nodes so frustrating....that can continue even for a while after recovery for the gland to get a little sore or tender, especially when under stress, but it will eventually settle itself down.

The low grade fever was the thing that really bothered me throughout the duration of the virus. That definitely goes Nicky....and once it does that is when you will really start to feel like recovery is starting to take full shape. Sometimes it can flare up a bit at times but generally your body reaches a stage where that is fully under control and you don't feel that way anymore - that is going to happen for you I totally believe it still - it caused me heartache and frustration for a similar length of time to you and then a turning point came....recovery WILL happen hang in there.

Craig

Hi!!!

Thanks alot, 😀 very nice of you.

I'm happy that you're still on the recovery road and that you feel the improvements!!!

Both thighs burning?

I hope it doesn't affect the quality of your sleep.

Hi mono,

That's Really horrible! So disappointing 'cuz there's nothing anyone can do about it! I still don't understand how this nasty virus attacks our IS in so many ways. St

My reply disappeared somehow? stay strong, it's so hard to see your beloved ones suffer! I don't understand how this nasty virus attacks our IS in so many ways!

HI rosie!!

Very nice reply, thank you, yeah my stools were loose, so i stoped eating fats and high-fiber foods. Ginger tea...i cant live without! My lymphs get swollen after overexertion or stress too. 

You're right, probably a bit more time is all that it takes.

Take care and tnx.

Hi craig,

Love your replies! They always help us to stay positive and don't lose hope!

I can no longer wait for that "turning point" 😂😂😂 hope it's so close! Lol

Stay safe! And THANKS.

Just a slight burn on the top of my thighs, no, I sleep well at night fortunately!

you sound in good spirits which is good. I'm sure you're near that turning point,I saw my gp yesterday and although I should still be cautious, I don't want a boom or bust situation, some people at the end of their virus seem to get better real quick, I've felt so better recently but am still worried it might 'get me' again 😬 

Anyways.... Best wishes all xxx

Thanks for the kind words Nicky, I do still believe you're going to be completely healed by the grace of God. The turning point is on its way rest assured. Same for you Caroline, and hoping that your thighs are feeling okay.

It still takes time Caroline even once you start to feel better, you still need to pace yourself for a good while, I remember I had a looong phased return to work. I was feeling much better but still needed to watch what I was doing. You think when going through it that your body resilience will never return and you won't be able to cope with anything heavy or stressful again, but it's amazing how your body recovers and it reaches the stage where you realise you are doing things you thought you would never be able to do again!

That feeling is going to happen for everyone on the site here

Craig

Hi Craig,

​How is your back? I have been having the ups and downs of the virus, overall feeling better, however yesterday was a very hot day and I started feeling weak and tired with the nausea. I sure hope this is over soon for all of us.

 

Hi Craig, 

yes, I'm definately at a turning point, feeling loads better, but thanks for the guidance. It's too easy to forget that I'm still weak and  that it can creep back up. I will still be taking it slowly and not returning to work at any point soon and when I do, I will do the phased return, slowly! 

Its great as I can see my improvement more, I felt a bit low/arm ache/breathless this morning, that would mean days of badness, but I felt better about an hour later. Fingers crossed even still!

back improved at all?! Imknowmthat can take a while. Keep moving and resting.xxx

Hey Caroline / Mono,

Thanks for asking about my back, still having some problems unfortunately finding it hard at the moment, just need to keep trying and trusting God hoping things can improve. Thanks for the advice Caroline!

Hoping the nausea has passed over Mono, hang in there. Also Caroline sounds like you are being very wise in how you're tackling your recovery - that's going to stand you in great stead going forward!

Thinking of you both!!

Craig

 

Ugh, do you all find with the virus that you pick up loads of extra viruses all the time?! I seem to catch a cold or flu anytime I come near someone with one it's soooo frustrating as it sets any progress back. I take multivitamins and do wash hands/use sanitiser etc but keeps happening! Any advice??

I have and still am a little bit paranoid about catching anything, I've only had a stomach upset, that was in the early days, I felt soooo bad. I kept nearly passing out. I have been lucky since and not had anything else major. Yes, good hand washing essential. I make the children wash theirs all the time too, especially after school.

Thanks for reply - yes that's practically exactly what's happened to me! Caught a stomach virus - and twice just suddenly felt really weird like I was about to pass out. Horrible! Hoping it doesn't happen again as I need to go out tomorrow. Fingers crossed it's wearing off... 

I was laid flat in bed, my arms would go cold and then have that weird feeling, sort of wanting to pass out, it was dreadful and I was so scared, i thought it was something to do with gf, but realised it was a stomach bug. Didn't last too long with me.

i hope it doesn't happen again for you! X

Hey Rosie,

So frustrating I know when that keeps happening, I think the virus just batters you and your immune system and it can be easier to pick things up. You're doing the right things taking a multi-vitamin, adding in a good dose of Vitamin C and Vitamin D even beyond that (but not beyond maximum daily recommendations of course) can help too, and I have found Siberian Ginseng and Ginger Root to be good herbs also for boosting the immune system.

That must have been horrible your experience too Caroline, everyone on here has certainly had a time of it, but rest assured things will get better just trusting God with that one.

Craig

Hi Craig,

thank you! It has been horrible, but now I'm feeling good, I'm still feeling good this morning😬😊😊

eekk!

Glad you are feeling good today Caroline....long way it continue you deserve it after what you've been through

Craig

Thanks Craig - do you take the ginger and ginseng as supplements or fresh? I have discovered raw garlic seems to help (apparently it's anti viral) though my friends etc may not be delighted 😂 But frankly I'll do anything for my health these days!! I think the stomach virus has resolved now thank goodness & managed my morning out. 

Caroline glad things are going well health wise! Fingers crossed it continues for you!

Hi Rosie,

I have always just taken them as supplements, only because that's the only way I know how really, maybe raw would be better not sure. Thanks for the tip on garlic too that's always good to know - yes I know what you mean you easily can put up with taking a horrible tasting supplement if it makes you feel better!! Peppermint is also good for stomach definitely worth trying. 

Craig

Thanks Craig - you are such a fount of wisdom! 

Keeping everything crossed for your back improving soon :-)

Rosie

hello everyone,

I've been reading your replies, and I have no scruple to admit that it's been the same for me, I mostly get bowel bugs, but Here I wanna ask you something else,

I've become so paranoic and I think I'm going through a kind of psychosis, It all started with this stupid EBV, I was for a very long time so anxious and scared that I guess it turned into a psychosis, I'm constantly hearing these thoughts in my mind about different viruses and bugs,

It indeed sounds stupid but like when I go to the gym " I hear " this " voice " in my mind that keeps telling me what if I get this horrible virus or that horrible one, maybe it's time to leave...every time I feel something's wrong with my body I get easily scared and I think this constant anxiety is kind of killing me inside,

It just feels difficult to control myself at times...I'm so fed up with these thoughts, they're not leaving me ALONE! sorry, I'm just a bit down, been like this more than 10 months by now.

Have you guys experienced such thing?

Ah Nicky that sounds horrible I'm sorry to hear that. Do you mean it seems like hearing an actual voice or it is thoughts that you get a lot? Either way sounds a good idea to talk to doctor or psychologist about it to get some advice.

I definitely struggle with anxiety at times about my health given all I've been through with it in recent times - at some times it's been really bad especially when symptoms are at their worst but it's generally better now through various reasons.  Are you able to eat enough now after your stomach troubles? 

Hi Nicky

I think that having anxiety as an aftermath of this virus is very common. It is an extremely difficult experience to get through and I think a fear of getting something similar is not unreasonable in itself. If it is making you unwell and affects your life try psychotherapy. I genuienly think that people can end up with PTSD after this experiemce.

I am an emotional wreck after this virus. Very moody, tearful, anxious. In general imbalanced. And i was always extremely logical, down to earth and stable. Now, more oten than not, I feel that I am franatically holding to shreds of sanity....

Hi rosie,

It is thoughts that get me alo0ot, I've become better but it's not leaving me alone, I've kind of matured a social anxiety, especially if I've to be in an indoor place for long. yeah, when I have my " Flares " it gets worse. 

tbh, I'm always asking myself ok can I eat this or what? lmao.

my doc tells me eat everything, but she doesn't understand that I get loose stools, so I tried avocado today for the first time after two weeks, if tomorrow I get loose stools again, I won't be eating that anymore, I am eating just rice, chicken, fish, toasts, a few cooked veggie such as celery, tomatoe, potatos, carrots, alot of yogurt, green tea, ginger, peppermint leaves, garlic, and sometimes I eat different types of berries. and that's pretty much all that I've been eating in the last 10 days, I feel better but not at my best yet  

I was thinking about getting digestive enzymes tbh.

hi natalie,

I hear you there!!! I'm emotionally a weak person, extremely sentimental and empathic, have always been, when I was 16 I witnessed a horrific accident , I couldn't get those images of those people out of my mind, I was diagnosed with  PTSD, and after a few weeks I was diagnosed with depression, took meds for years, they really helped me sleep when I felt so scared and nauseated. I no longer need meds, I can control my panic attacks but this is too much I wanna be normal again.

I'm so sorry people, I've turned into a whining bu* tonight can't talk to anyone about these issues.

Hi Nicky,

​I think the virus effects the nervous system, I feel like I have a lot of thoughts concerning health also, I have always been healthy so coming face to face with something you have no control over is very tiring, I find when I have good days these thoughts go away. If the thoughts are not constantly there it is probably this virus, It is a good time to visit the forum, so nice to talk to people who understand this.

​My granddaughter who was 16 when she became sick had awful panic feelings and this has since gone away, the doctors wanted to put her on medication, but it cleared on its own.

hi mono,

It's so true,I guess it's probably the virus, because I've not been having panic attacks or any negative thoughts for many years, this virus has had a bad impact on my brain's chemistry...all these negative thoughts came in my mind after I got the virus.although it was waaaaaaaay horrible at the begining of it all now it's kind of mild, but still...you know, it annoys me.

Thanks for your great reply!

Hi Nicky,

Really feeing your pain, I really do understand the feelings of discouragement and disillusion when you're trying and not able to 'break free' if you like from the things holding you back. You will get free Nicky, take it to God, it's so hard to feel positive and optimistic when things feel like they're not going for you and you can't see progress.

Don't beat yourself up for feeling like this, it's only natural considering the circumstances and everything you've been through. But remember it's also only natural too that you will make a full recovery and this time will be in the past one day very soon. Just hoping for a good day for you and wanted to let you know I get it and am thinking about you.

Craig

hi craig,

I'm doing my best to stay positive, though sometimes i seeem to have no control over my brain, i think everyone has experienced such times? All I do is distracting my mind from anxiety and bad thoughts.

thank you so much, i hope your back is better now?

 

Hi Natalie,

​How are you feeing overall? what improvements have you noticed? I am hoping that the down feelings are the last symptoms to go. This virus has been so hard on everyone, I hope for full recovery for all.

Hi Mono

I am better physically I would say. I have more stamina, can walk far and got back to work. I work only 5 hours a day but with travelling and school run it meabs I am up from 7 to 5. That being said at 5 I am done. I feel such a fatigue that I am unable to do anything else but collapse on the couch. And the more tired I am, the more tearful and moody I get. It is like a black cloud is descending on me. I cannot control my emotions and brain.

So tes depression is the most annoying and debilitating symptom for me now. It has a silver lining though. I have moments of feeling better. Therfore when out of the blue I descend into that black hole it makes me so angry...I do meditation, mindfullness, psychotherapy, light therapy and I relate to my friends a lot. I tried antidepressanta-not for me.

It feels to me that those sad feelings are very physical though as even when I feel very sad, I know that there is no reason for it. I just cannot get rid of that influx of sadness. I am sure that this virus messes brain chemicals up.

From physical point of view. I have retracted eardrum in left ear and chronic inflammation of Eustechian tube and sinusitis. This is a result of glandular fever. Still did not get rid of it. Waiting for a hearing test and next consultation with ENT.

My hormones are a mess. My PMS got so much worse since I had the virus.

And fatigue tgat when it comes it floors me. Although it is not a major issue now. Very annoying though.

Hi Natalie,

​I understand how you feel, I am able to stay up longer too, The low mood that washes over is so strange and then it will lift, mostly in the morning and by evening I feel normal. 

It is the virus. I have been going through the same thing. Always managed to handle everything until this virus. My mind has come up with all kind of thoughts. Some days worse than others. Slowly starting to level out some. Worse thing i have experienced in my life.

Yep I think it's officially unanimous - this virus turns even really calm people into nervous wrecks!! But we will get better from that part just like all the other parts. Actually a major theory of post viral illness is that the nervous system gets 'stuck' in 'fight or flight' mode from fighting the virus and that the more relaxation stuff you can do the better it is for your recovery.  Distracting yourself from dwelling on worries helps like you said, or I second Natalie's suggestion of mindfulness and psychotherapy.  I couldn't have stayed sane(ish!) without those. Just treat yourself to any relaxing/supportive activity - yoi deserve it!!

Hi Nicky, sorry that you are having trouble with germ phobia! This has been an issue for me as well!

It is not nearly as bothersome for me as it has been. Thank God! it is very consuming. I am still very conscious of germs and pratice good hand washing. This sounds a bit  but I will share with you how I have made lots of progress with this. I also believe it is a part of the virus! 

We have a houseboat in a marina. When I would use the public toilets I was so afraid that I would get sick. My husband is very healthy. He never worries about germs if he even thinks about them So when I get phobia about germs I say out loud the more germs the better. The more germs I come in contact with the healthier I'll be. This has seemed to help me.I think just feeling better will help. our mind seems to start having normal activity thoughts and stops bombarding us with phobic germ thoughts. This virus will not succeed in it's attempts to control our bodies, minds and emotions!

We wil all get completely well. It seems that we can see little progress on a day to day basis but as we look back months we can see that wehave come a long way!

Mono how is your daughter?

Rosie, Caroline, Natalie, Brent and Craig you are all in my thoughts and prayers daily!

I am so thankful for this site where we can keep in touch and share our experiences!

GeriBear please let us hear form you! 

Rhonda

 

hi brent, yeah same here, I don't know if I will ever be free of all these scary thoughts, it's totally destroying my everyday life. It was so much worse in the first 4 5 months but now it's getting better but still annoying.

I hope your overall health is better.

thank you rosie, I'll  do my best to keep a positive mind, unfortunately I went through a series of disappointing events since I got sick, it's been kind of hard for my body to handle all that both mentally and physically. I'm sure a great part of my syptoms is caused by my anxiety, I'm totally aware of it. 

hi Rhonda,

Long time!

I'll seriously start doing the same thing :D might as well work for me! I wanna be the owner of my body and especially my MIND once again! Thank you, Wish you a wonderful day!

Wow Rhonda, you are still here too! Thanks for wishes.hows things going with your health?

I'm exactly the same Nicky, it's exhausting dealing with this anxiety isn't it. If only we could just wish it away. Mine has flared up too after my stomach bug -I guess my body is exhausted from that and my mind is panicking about health.  You sound like you are managing to do lots despite it - well done. My main concern is not being able to cope with my job - the phased return is a real struggle at times. I feel positive about it when I'm healthy but on worse days like today the anxiety flares up.  I am trying to pace myself and take one step at a time. Fingers crossed...

I can totally relate to what you said! my anxiety was almost gone, but since I got this stomach or whatsoever bug, it's come back stronger than before, you won't believe me, I'm even worried about eating the most plain things.

I know what you mean there, working while you're anxious and kind of sluggish is totally a pain in the bu*, though sometimes it kind of helps me to distract my mind from all those thoughts. I hear you there and hope your anxiety goes away, staye safe! we've been through worse! hopefully we all manage to get rid of it all ASAP.

Thank you so much Rhonda for your prayers for me, they are really appreciated at a tough time for me also - and most definitely keeping you and everyone here on the Forum in my thoughts and prayers too.

God bless you!

Craig

Ah don't worry I completely believe you about being worried to even eat plain things - I had to be tube fed in hospital a while cos I couldn't keep any food down - it was horrible and definitely the low point of the illness and I went almost nuts with worrying I'd never be able to eat again but also worrying about eating cos it caused me so much pain. But that part is over now thank goodness that was over a year ago now! I agree that work is great for taking mind off illness when possible which is one of the reasons I'm keen to do it (also cos I enjoy it and cos I need to pay the bills!!).  Stupid stomach bugs.  Hope we all feel better soon :-)

Gosh, we all have had such a horrendous time with this.. Although I've felt really dreadful for months, I haven't suffered as bad with food.like some of you have, I've had the nausea etc.....people suffer all so differently.

but this is all fading for us slowly. I'm having more better days, but still sooooo slow. 

Keep thinking of those better days, they are coming!!!

caroline x

Hi Rhonda,

​My daughter is still feeling terrible, she works but is barely able to get by. I so wish she would she could recover, it is very draining for her.

Hi Caroline,

​How many good days have you had in a row? or do you find it is still up and down day by day?

Hi mono,

ive had about 6-7 really normal days, but last night and today I've been mostly in bed feeling horrible. I almost felt like I was better but it's obviously not that easy, still is going to take time.🙁

OMG, seriously? i'm so sorry, must have been really horrible ): This is the weirdest thing I've ever come to know, how this tiny 180 nm cell can cause all these horrible issues?!!! I can't believe that we still have no cure for this nasty creature. it surely has paralyzed a great part of my life since november. 

Yes, I love my job too, even though at times I can't quite concentrate on my cases, and it's hard to hide it from your colleagues :D

Caroline, GOOD POINT , it's INDEED fading! even though slowly!

Nicky, a couple of hours rest and I feel better already...not enough to do anything or much yet but quicker.

yes, it's fading and incredibly so will some of the memories of this, can't wait eh!!!! X

CAROLINE, I'm just the same, I recover more easily, a short nap or laying down and I feel better

LOL, your last phrase just brought a big smile on my face  looking forward to that!

Ahhhh Nicky, 

lim glad that made you smile..... I'm Having a really hard day today, just things are much harder work and needing more rest today....been doing so well too😩

BUT.....I'm hoping it'll pass soon... It's great to know we are improving, I keep telling myself that, we ARE getting better! It's brilliant that you're feeling the same. You got this the same time as me to didn't you?!? Nov/Dec 16'

x

Hi Caroline,

​I am having a down two days also and I have a wedding to go to tomorrow, I hate feeling stressed about going to events that I would normally be so happy to be going to. I hope you feel better soon. I had nausea yesterday and today the weak, achy feeling.

You both have my sympathy - I'm having a rough week of it too - on my third day stuck in bed resting, glands all up, sore throat n neck.  Stupid gastroenteritis setting me back :-(  hope you both feel better soon!

Hi Rosie,

​I hope you feel better too. I have been battling this since the end of October and am just tired of these feelings.

Ahhhhh Mono,

yeah, since last night I've not been great and I know EXACTLY what you mean, normally look forward to a wedding but with this....it's just such a downer. Bit of nausea today too.

oh it's so annoying....

i hope you're ok for the wedding and also that it doesn't knock you up too much, that makes me cross too😡 

X

Thanks - me too. Just would love to be able to live a semi-normal life again and not stuck in bed in pain.  Still, must try to remember all progress have made over past few months even if still a way to go and a worse than usual week. Here's hoping for a better week to come.

Same as, mono....it's roughly been that long for me....

I'm sad of resting and waiting for it to pass, sick of feeling sick and not doing anything...😩

Grrr

Rosie, it's not fair is it.... And you've had this way longer. The end can't be far away can it?! I hope this nasty phase passes soon xxx

Thank you for all the support, I don't know what I would do without the forum, it is comforting to know we are not alone. 

I know mono, it's nice to know that we are not alone. And comforting to know that this is normal to take this long to recover.

 

Yes, thanks everyone for being here :-)

Croline, Yeah november 16th, I felt like a corpse so I laid down and told myself am I dying? couldn't even go to the bathroom.

I'm sorry that you have alot to do, it's so hard I know. so annoying that it goes and comes back My doc thinks I might be getting some pancreatic issues as well :'( I mean seriously I'm not even a drinker nor a smoker.

do you people still have swollen glands under your jaws? mine are still up...sometimes those near my thyroid hurt as well.

I hope everyone is doing better today, I'm pretty better today, could it be because it's kind of chilly outside?

I was corpse like from dec25th! But diagnosed from 5thdec. Felt tired from about November. Not sure really when to count from??!🤔

It REALLY is annoying how it goes and comes back. 

You don't need any more issue, hopefully it's just a symptom caused by gf and will clear up soon as well? I don't drink or smoke either.🙄

My glands don't hurt, feeling a bit achy but I normally just have to see how the day goes.

its not that warm here, but I am in england!!!! Lol

 

Hi Mono / Rosie / Nicky / Caroline,

Just wanted to let you know I'm still thinking about you and even though you're feeling weary at the moment, just a word of encouragement that I firmly believe that although you guys might not be feeling the best today, you have DEFINITELY already weathered the worst of this virus, and won't have to go through nearly as much in the future.

I know it's hard to see that when feeling so discouraged and feeling like you have tried everything. I know that feeling too well, I'm going through it a bit at the moment with my back, but there is still hope there and just hope we can all keep trying in the right way and that God will help us get back on track.

I'm the same as you guys Nicky and Caroline, I don't drink or smoke either, that will definitely help in your long term recovery without any doubt.

Take care and thinking of you all

Craig

P.S. Caroline we were never built for good weather here in UK!! That's why Vitamin D supplements are good for us too!

Haha, I hear you Craig, def need vitamin D! I've also started taking a probiotic,so will see if that helps....

might have a few celebratory glasses of bubbles at Christmas WHEN I'm better though!!

you know it is really hard to see the end when your energy is gone, you just think when is this ever going to end?!  It's nice to be reminded it will be one day gone forever.

hope the back eases soon xx

Thanks Caroline, yes probiotic can be a good one to take too especially for things like stomach infections, etc, good to get that healthy bacteria in there.

You just take care and as you say we will all get through these things we are dealing with!

Craig

Hi Craig,

?I don't smoke or drink either, it just goes to show how strong this virus is. How did it leave you?  Did you feel like you had many little relapses r did it just go away one day?

Hi Mono,

Yeah sure is and it will defo help that don't drink or smoke! I did feel like I was having mini-relapses in the run up to full recovery, and even afterwards there were one or two kind of wobbly spells, but overall I found that there was a stage where I felt I did make a jump forward, and although wasn't perfect it helped because I felt a bit more normal and human at that point.

I think everyone's experience seems to be different though, but what I would say is if you're having a bad spell just now that can be a precursor to a major step forward after it sometimes, so hold onto that hope in tough times. Thinking about you and your daughter.

Craig

 caroline,

I hope so, it'd be so disappointing because I dont eat junk / refined and processed foods at all, and it'd totally change my life, Already struggling with this crap, finger crossed :'(

yeah I see, I just got those that annoy me, the rest are silent :p I'm pretty sure you enjoy your cloudy days in England :D

 

Hi craig, Yeah , though sometimes it seems like those who eat and drink whatever are healtheir than those who follow a more healthy diet! lol the human body, so strange!

Thanks for your constant support, we DO appreciate it, I hope your back is at least getting better?