Not yet diagnosed properly

I understand Caroline, that is what happens to me. I felt ill Saturday and then better, this morning I woke up feeling down and exhausted. Hope you feel better soon, it does seem to pass by a little more quickly, I just wish it would go away for good.

 

Yes, the improvement is there, but it's just sooooo slow. When I feel better I feel on top of the world and so positive, and then it strikes and I just feel so slow,achey and low. It's frustrating as there's things I want to do but I just can't, just feel a little bit trapped or claustrophobic by it. I can see the end and I know it will go but just wish I was better yesterday!!!  😢

Ahhhh shawna, it feels like I'm reading my own autobiography!!

ive been doing so well lately, felt normal did some normal things but I am,like you, down today, achy, exhausted.

i believe that once you're better, people forget just how ill they were and don't not have the time or inclination to stay on this site, except Craig, he is the exception!!!😊

People will get their normal lives back and return to normal, I've spoken yo a few people who had this for a year or over

So, don't feel like you won't get better, we ALL will, it's just so hard to see in the low mood state. But have comfort as I've been suffering as long, I'm in bed feeling horrid. 

I keep thinking this has gone on too long, it's ridiculous!! We could write a book with all our experiences!!! Let others know.

Hi Shawna,

​I too am having a down day, I have been sick since late October, that terrible down feeling is so hard to get around. This goes on so long I think we forget how bad it was in the beginning. I know I feel better and it should be coming to an end soon.

​When I first came to the forum there were many people on here who no longer post, I think they have probably recovered and gone on with life. I would love to hear their recovery stories. Thank god for Craig.

Hey Caroline, 

Thank goodness for Craig. Seriously! When I first came on this forum, reading his story gave me sooo much life and hope.  Sometimes I go back and read his post just to feel better. 

But like you I've felt great for a couple of weeks  and this happens. I may get a little tired after work but nothing like the exhaustion and low mood. The mood is awful and terrifying at the same time. I was always positive and could see the good in any situation but this is just awful. I thank God that I don't have the feeling as though I'm coming down with the flu as I had in the beginning. 

Things have changed for the better with this virus through time. It's just taking so long to come to an end without any residual effects. We are not getting any younger here. 

Hey Mono! 

It sure is. Sometimes I feel like it's more debilitating than the fatigue. 

Oh I remember the beginning. I just worry about plateauing.  Worry, worry, worry! That's all this virus brings. 

I would like to know about those people too. I pray they have all made a full recovery. 

Thank goodness for Craig and you guys too. You and Caroline have really helped me also. 

How is your daughter by the way? Is she hanging in there? 

She is still tired, flu like symptoms and gastro issues, we both have a wedding to go to today, she is maid of honor and it will be very trying as it is in the mountains and requires driving and it may be very warm, we are hoping to hang in there today and not have a crash tomorrow, ugh the stress of something that should be so joyful.

Ahhhh, thanks shawna, that's very kind of you.

mmm yeah, the plateauing, it's a thought I've had, but because progress is 'sloth slow' (I think they should rename it glandular sloth fever or monoslotheosis. 😂.) It's actually hard sometime to see progress, especially when you have a bad day, almost feels like back to square one. 🙄 

This Christmas HAS to be better than the last one!😃

Shawna, they must be all ok, otherwise I'm sure they would be on here still.  

 

Hey Shawna and everyone,

Thanks for everyone's kind words, it really shows me what good people you are to say such nice things despite how much you are struggling yourselves.

Remember I'm much further down the line in terms of when I had glandular fever, for me it was over 10 years ago now since I got the virus, and after the end of the first year I was pretty much in the same place as what some of you guys are at the moment - feeling some slight steps forward but not enough for you to feel like you can say you're feeling full better.

I really do get it, how it saps your positivity and attitude and makes you feel depressed and discouraged. BUT the next year is going to be a much better year for you. The second year for me was a joyful one because although maybe still feeling some effects at times, i felt SO MUCH better and felt more human again and like I could pick up with my life again - that IS going to happen for you Shawna, Mono and Caroline - believe me and this Christmas will be much better than the last one!! It's only because I remember how badly it affected me and how much I really sought out for encouragement rather than scare-mongering on the internet that I want to come on to the site and let others know that there is hope and is light at the end of the tunnel and life beyond glandular fever!

And the fact I'm going through a bit of a tough time myself just now with my back reminds me how hard it is to go through something painful and debilitating - so I'm really with you all just now in my thoughts and remember each day is another day towards recovery for everyone!

Craig

Ahh Craig,  

those words of encouragement mean so much right now, having a few low achy days and as positive as I am I sometimes (when I feel bad) wonder if there is ever an end or if it will turn into something more long term which is frightfully scary.  Roll on next year I say! 

🙂

Hi Caroline,

?Made it through the wedding, it was wonderful and I felt well throughout, my daughter made it through too, although it was exhausting for her and a she  she left after a few dances, she said if she didn't have the virus she would have danced all night, she isn't feeling to well today but she made it.

?I have felt ok today, but always looking over my shoulder as I have good days followed by down days.

?I agree bring on next year and good health.

Oh wow! Well done and for your daughter! 

I had a wedding in June, felt great through it but had to cut it short at 8.30pm, crashed when I got in.... But I know how you daughter feels, could've danced all night!! Not fair is it.😟

Its great when you feel good!  but yes, you know its waiting to come back again, and I always think it won't. (Nievely) I always think that's it, getting better now.

😤 So frustrating.

Hi Craig, 

Thank you so much for your encouraging words. We ALL need it right now. 

We all know we have come so far but still wondering when will all of this end for good.  Where we can move on with our lives and not be on eggshells wondering when the next symptoms will hit. 

It is such a struggle. I had a couple of good weeks. Everything a a minimum. Except for my throat discomfort which is constant. Now I am in the bed with fatigue, achiness and just an awful mood. It sucks. It's hard to see the light at the end of the tunnel. 

I am really praying for you to feel better. Any type of pain is so debilitating especially in your back. Stay positive. 

I'm right there with you Caroline. 

I have never felt so tired in my life. I have different pains here and there. But what makes me so depressed is my gastro problems, fatigue and my throat tightness/pain. 

I have always been strong and able to handle everything but this messes with your psych as well. 

I would just like to know when will it come a time that all of this is gone for good and I can be better than ever. 

If only we all would know when!

just hate hate hate it.

depressed mood, achy arms, air hunger, and exhaustion. These are my symptoms that grind me to a hault.🙄🙄🙄

it  definitely messes with you.makes me so sad.

 

Hi Mono, 

I'm glad you guys were able to make it through. Sorry your daughter is no feeling well today. 

It seems that is all I do is look over my shoulder as to when the next episode will occur. 

It such a depressing virus. I'm praying our lives have just been put in hold to open our eyes to show us how precious life is. 

Does your daughter take anything for her gastritis? In the beginning of my virus before I knew I had mono but had stomach pain the doctor gave PPI which made things worse for me. I could not take anything because it made my throat and chest burn. The PPI gave me heartburn. Never had heartburn in my life. All I had was stomach pain. I am praying it is all part of the virus because I'm afraid to take anything. I drink aloe Vera juice daily. I drink the one without the preservatives because the citrus in the others gives me heartburn. 

I'm just over it all. 😔

Shawna❤️

What is air hunger? 

I think you and I have been suffering for the same amount of time. 

What were your symptoms in the beginning that made you see a doctor? 

Christmas Day I felt ill like never before. Like I was coming down with the flu. Horrible stomach pain.  For the month of January, at night I would get really bad chills and shaking and feel ill every night. During the day I could feel my blood cycling. I would feel horrible one minute then kind of ok the next. I knew something was going on but no doctor picked it up because they were focused on my stomach pain and now the burning in my chest and throat after taking PPI. 

No one else has the gastro problems like I do which makes me more worried that it's not temporary. I want it all to go away. 

Hi shawna,

sometimes I need to take deep breaths a lot, feels like I don't have enough air, I suppose that's just exhaustion.

i was diagnosed (5dec) before I got really ill,( that was Christmas Day evening) 

cloudy water is really why I went to the doctor in the first place, and she was so thorough. I didn't even feel that ill.

christmas day evening I had extreme tiredness, was in bed for about 3 weeks or so, then got slowly better, but managed to get dressed but just sit all day not moving! Tingly achy arms and legs, two stiff necks, crying, aching,burning thighs, very thirsty,  awfulness. Then it's just been up,and down like a roller coaster ever since, just slowly getting better.

X

She can't really take anything for the gastritis, she did try tums last week, she has such a sensitive stomach these days. I will tell her about the aloe vera juice.

Oh I wasn't sure what you meant by that I thought it was autocorrect. 😂 Yes the ups and downs. 

On the 4th of July. I truly felt like myself. I mean I had no stomach pain, no heartburn, no brain fog or pressure in the head, no throat soreness or tightness. NOTHING! I felt totally back to normal. Energy as well. For one full day I felt like me. The very next day it all came back. 😔 

That day brings me a lot of hope that everything I am experiencing is this horrible virus even the heartburn. 

I have been in bed all yesterday and today. Lots of fatigue and low low mood. 

I love just chatting with people who understands. People in my life just don't. I know we all are getting better it's just taking some time to fully recover and from what Craig says we WILL all make full recovery. 

Thanks for listening Caroline. 

I can't take anything either. I'm not sure where you guys are but I get the Aloe Vera without preservatives or additives.  It's 100% Aloe Vera by George's. 

I hope that can relieve some tummy pain for her it has for me and it has helped with my throat. 

Shawna lots of us have gastro issues from the virus - you are definitely not alone on that one! I too was prescribed ppi's which didn't work. Only thing that worked for me after things had escalated to a ridiculous level was to eat a low-fibre semi-liquid diet with not too much fat. Which meant not eating as much fruit and veg as I wanted to for a while but was worth it to heal up and I took vitamins.  Blending things up into shakes and smoothies and soups help rest stomach so it can heal.  Really weird things have lots of fibre in such as avocado and bananas, which seems really soft n soothing, not just obvious things like brown rice and oats and beans. I highly recommend trying this diet to heal - less than 20g fibre per day and less than 50g fat :-)

Hi Rosie, 

I'm just worried I will have these issues after the virus. It's not too much I can eat. The doctor gave me PPI which made things worse. I am still upset about that. Didn't have heartburn before that. 

I had a month and half of no stomach or heartburn but I got too excited and started to overeat to gain all the weight that I lost back but my stomach was not ready yet I guess. I was nice eating everything again. Things came back but this time it's stomach pain, burning and heartburn. I worry more about the heartburn because it burns my throat. 

I just want to feel better and eat without worrying about pain or heartburn. 

Yes stomach issues are horrible aren't they - mine have flared back up following gastroenteritis this week :-( have you been checked/tested for h pylori etc? What are you eating / drinking at the mo?

Yes I have been tested for everything. No H Pylori but mild gastritis and esophagitis that cleared in April per endoscopy. 

I was sooo happy to know that it cleared even with the pain I was having. 

That's great - like you said it got better before so it will again! Me too I had everything checked and no major problems found - fingers crossed we heal up again soon :-)

Yes I'm just praying these issues doesn't stick with me and are part of the virus. Not knowing what to eat is very challenging and the weight loss is depressing. I was small to begin with so losing 20lbs make me look super small. I was this weight in high school. 

I'm just over everything. I look at people eating and wish that were me. The things that we take for granted. 😔

Sorry to hear that. I'm pretty sure it is the virus / from my endoscopies all they found was lots of virus-fighting cells in my stomach so I guess once they win it'll be fine again! I was back eating anything I wanted for months before my relapse last week so I'm sure you will too. In fact once better my appetite was much bigger than normal and I gained quite a lot of weight! That will be you again in a bit of time I'm sure :-)

Ah shawna,

i look at healthy people running and just doing normal exercise and wish that were me, so I know how you feel.  You will will will get better, it's just not fair that you've had to suffer just so long. I'm having a good day, recently, but I'm now thinking how long will this last?! And hoping really that it will just continue.... I just seem to go up and down.....just need that up and then stay there.....🙄🙄🙄

Hi Rosie and Shawna,

​My daughter suffers from gastritis also and has also lost weight, she feels like you do and has little to eat that agrees with her. 

Thank you Rosie. Interesting that you say that. I woke up one morning with no stomach pain and no heartburn- nothing with an increased appetite. I was hungry all the time. So I started to eat not so good things, fattening things. I had a good month and half of this Then back to square one with watching what I eat. 😔 I just want to be well. 

Me too Caroline... me too. So frustrating. I wouldn't thought in my wildest dreams I would have to experience anything like this. I'm hoping that you will continue with this positive streak and and all the bad things behind you. 

Rosie Shawna, Mono, anyone else with gastric issues. You might try Probonix it is a liquid probiotic. Also start a teaspoon of apple cider vinegar in water before meals. I have had lots of gastric issues with this virus and both seem to have helped. I no longer take the ACV unless I have reflux. I also see a chiropractor who is very gentle and has therapies, water massage, chair massage, lumbar table and others. I also have adeep tissue massage every week. I have gained my wt back. I had lost so much wt I cried every time I looked in the mirror!

The chiropractor told me he could help my digestive system. I wasn't sure about it but by God's grace and mercy it has worked for me. I know we are all different.

Looking forward to our post saying we are fully recovered!

Rhonda

This is awful! Not only are we dealing the effects of mono but we are also dealing with gastritis. That's a double whammy. I just want to be well and I'm sure she does too. 

Mines was mild and then it came back I believe. If this is mild, gosh I wouldn't want to know what the latter is. 

Is your daughter taking any vitamins? 

Praying for healing for us all. 

Hi Shawna,

​No her stomach is so sensitive she is afraid to put anything on it. Her blood work looked good on her last check up other the Epstein Barr.

Hey Mono,

Just to let you know I'm still thinking about you and believing that you and your daughter will both make complete recoveries thanks to Jesus. I know it's so hard to hold onto hope and belief when going through such a torrid time....there will be an end to that though I still believe even though it might not feel that way now. I know it must be such a tough time you're going through dealing the virus yourself and trying to support and encourage your daughter through it also.....you're doing an amazing job given the circumstances I can really sense that. Hang in there!

Craig

Hi Craig,

?Thank you for you encouragement. My second granddaughter ( sister to the first granddaughter that got this started) just had blood tests  as she was feeling tired and guess what? Epstein Barr, the pediatrician said that it had been within the last month and she is now going into recovery phase, Everyone has been very careful not to share drinks ect. She seems to be doing ok other than being tired and she has headaches. 

?I wonder if this is more contagious than originally thought.

?I am hanging in there only one low day yesterday, my daughter about the same although she has a few hours of feeling a little better every now and then, so we are trying to stay positive.

?How is your back? I'm hoping that you are feeling better, if not the pain management doctors are wonderful and the injections for the back do provide a great relief.

 

Hi Rhonda,

How are you feeling?

Thanks Mono still struggling with my back unfortunately it's been a tough time.

So sorry to hear about your granddaughter also...that's terrible. Yes drinking glasses seem to be a way that it can be passed on....main thing is just to focus on as you say trying to remember everyone will get through this and things will get better - I still believe that.

Craig

Ha I so get what you mean about people jogging. I see them out of my window and think - wow, it must be so weird to feel so healthy that you can go think " hm, I have some spare energy, I'll just go and run round just for the sake of it!!" Lol

😂 I know! Jogging, who wants to do that anyway!!!

i have been doing consistently well recently, even went for another gentle swim today, that really seems to relax and help me. I hope all of you reading this know we are all getting better slowly. It's actually happening! I'm still being careful.

let us know how you're doing! Xx

Haha good point, I hate running anyway! I'm more of a yoga/Pilates girl!! That's great that you can do swimming and that it's helping you.

 I'm still on a dip from the stupid gastroenteritis so not making it out of the house at mo but fingers crossed it'll bounce back up soonish..x

My passion is ballet, but it'll be a while before I attempt that again. Yes, you'll bounce back up soon .xx

Ooh ballet awesome.  Thanks - hope so!x

That's great to hear you have been doing a bit better Caroline - just take it each day as it comes still it's all we can do!! Swimming is great exercise, main problem for me is I can't swim!!

Excellent that you like yoga / pilates Rosie, that can really help although I know it can be tough I tried pilates a while back! Great stuff about the ballet Caroline, I don't think I'm that cultured! I think I will stick to walking for now just grateful when I can do that.

Craig

 

Sorry to hear your back is still giving you grief Craig :-( hope it sorts out soon! I'm not up to doing Pilates etc yet but hope to gradually get back to it as I get better. Yes a lot harder than it looks! I did it for a few years and lots of people in my classes had come to it through back pain actually - I imagine it must be very tricky at that point!!