9 Weeks into Glandular Fever & Struggling! Looking for some reassurance

Hi Sam,

You sound like me at five months, I didn't start feeling better until about 6.5 months in and had a minor relapse last month as I tried to do to much, so just rest as much as you can and just know it is a long tough road. I am still not as energetic as I once was. My daughter also has it and is at nine months working, but still struggling with the virus.

The depression is as bad as the virus and I am convinced that it is part of the virus as I had never felt that way prior to this. It will get better though, you will start having periods of feeling normal for a short time, this comes and goes for a couple of months and then the symptoms start to lift one by one and you will start feeling better. All the best to you.

Post any specific questions or concerns you might have and I will answer as soon as possible, This forum is a great resource for people suffering with this terrible illness. 

 

Hi Sam Mono gave you great advice.

I am in month 12. I am now having better hours and sometimes a couple of days in a row that I feel fair. Some of my early on symptoms still rotate through. Not as severe or intense.

Fatigue which causes some muscle pain still is my most often symptom. I just lay down and rest when it hits. If I am driving I pull into a parking lot and lay the seat back for a rest.

God will bring you through this. It takes time. I feel most of us agree we will never look at good health the same! I feel it has and is changing me in a very positive way.

The fatigue, depression and anxiety will get better. Hang in there taking a minute at a time.

Rhonda

Hi Sam,

again, when I read this, this sounds identical to me.

it has also been the worst time in my life... I think if you knew when you would be better you would be able to cope more?!?!

the depression and crying is a big part too. I have NEVER suffered from anything like this so its definately part of this nasty virus.

chronic fatigue went through my mind but it just takes this long to go, so I've stopped worrying about that.

about month 5 I felt better, did a few dog walks and went back down again.

im now in month 9 and having a week in Italy on holiday and this week has been really really good. A few dips and feeling sicky here and there and tired but I rest straightaway and wait for it to,pass.

i am doing so much better, improvement is happening it's just so slow it's hard to see. 

Just don't rush things, go with it. Do little stuff and then stop when you feel bad. 

Youre not alone!!!

take care, Caroline x

 

HI Sam,

It really is an awful experience, just want to reassure you that it is normal for you to feel this way after that length of time, like Caroline, Rhonda and Mono I was the same at this stage and just didn't know when or if I ever would get better, and started thinking about Chronic Fatigue and everything. But remember you will get better, full recovery does come even after month of going through this, so hang in there even though I know it's hard to cope with at the moment - it won't last forever and full recovery will come in time, don't panic if it doesn't come right away because it will still come.

Thinking of you and fully believing in your recovery today.

Craig

Hi Sam, you might like to read Roger Black's Epstein Barr virus recovery story. I find it encouraging. Just google Olympian Roger Black nearly beaten by Epstein Barr virus. It took him 18 months to recover. Don't give up.

Rhonda

I didn't know that about Roger Black Rhonda, and I'm a big athletics fan too! Will need to look into that. Craig

Hi Rhonda,  that's interesting! I've just read up about Roger Black. I think it's wrong that the NHS website and other sources think that gf only lasts weeks,when in reality, I've heard lots of people suffer many months. This can put unduly stress on us sufferers! 

Ive just got back from a week away and it's done me good so far! As roger said, he went away to recover. Although I was very anxious about my recent holiday, it was a relaxing change.

 

Hi Craig &Caroline. It is so good to hear you was able to enjoy your time away! I feel that as much as possible we should do something we enjoy every day and also have someone who tells us everyday that that we will overcome this virus and be completely well. Even say it a loud to ourselves even when we may not feel it is happening.

Craig I feel sure you will enjoy the Roger Black story too.

May we all be encouraged as we continue to deal with our struggles. Keep the faith and look forward to better days ahead!

Prayers for all!

Rhonda

Hi Rhonda,

That was an interesting story, 18 months I can't imagine. I felt a little better this week and then today is a crash day, a little to much work I guess.

Hopefully we will all be over this soon.

Hi mono,

hopefully your crash day will be short lived and you'll bounce back quicker!? X

Glad to hear you enjoyed your holiday Caroline, yes it’s difficult to know whether you’re doing too much by doing that and if it offsets the relaxation you gain, but it sounds like you got the balance just spot on well done!

Thanks for those words Rhonda, most definitely I agree that is a great thing to speak over yourself that you are recovering each day and speak your health in the present. I know I could be better at that at the moment. Also very important to try to do something you enjoy each day if possible, even for distraction or just take your mind off the present situation.

Thinking of you all and still FULLY believing in your recovery (God heals).

Craig

Thank you, it is such a good sign that you made it through your vacation. I am tired of the up and down, I know I feel better than I did, but then I wake up to a down day. Ugh.

Hi mono, 

i completely get that mono... I know I'm getting better but it's the ups and downs, so hard to deal with. I just seem to go quiet and really down, lately it lifts pretty quick. Rooting for us all x

Hi Caroline & Mono. I think one thing we can be thankful for is knowing when our symptoms return that they will go away. I remember day after day hour after hour week after week with no let up or very slight improvement. What a nightmare this virus is! Hoping we will all wake one morning and it will be gone!

I needed encouragement yesterday and I read another Epstein Barr virus recovery story. They lady said her recovery was very gradual. So that it was difficult to acknowledge. Then one day at the end of the day her tiredness was a normal tiredness you feel and not the fatigue you feel so often throughout the day with the virus.

We will all be there one day. I know we will all be so grateful for our healthy bodies, minds,emotions and Spirits!

Thinking of you all!

Rhonda

Thinking of you all still, there is still hope today Mono, hang in there, I know it's been such a hard time for you and everyone reaches a breaking point. Thank you Rhonda for being such a rock in your words, they help me so much also at the moment. Thinking of you and Caroline and Mono and rooting for your recovery, believing in it thanks to God.

Craig

Hi Craig,

This relapse is not as bad as the original virus, but feeling the nausea and tiredness again is discouraging. I remember that your had a relapse, how long did it last?

I am sorry you are going through back pain, I wish you the best and hope that it lets up soon. Are you seeing improvement? I appreciate as always your encouragement.

Hi Mono,

Yes that's right I had one major relapse and I suppose a few other some very minor mini relapses as well on the road to recovery. There's no way it will last anything like the first virus, my big relapse lasted a good few weeks, maybe a month or so if I remember rightly, but I had other ones that flared up and disappeared within a week or days too (and that included one when I tested positive for EBV on a blood test again) - so it can't harm you the way it harmed you first time round, that's the key thing to remember.

I know it's so discouraging and hard. I'm sorry I shouldn't be using this forum for my back pain, but I feel in a similar situation to folks on here in many ways as been trying everything without seeing any improvement. Just hoping we can all get through our trials! Trusting in Jesus to help us. It's not easy though I know that, wish it was easier.

Craig

Hi Craig,

My mother suffered from back pain last year and ended up having a pain management doctor give her an injection in the back, it was to last six months and it has been over a year pain free. It was done in the doctors office and took less than a half hour. 

Thanks Mono, it's great to hear that your mother is pain free now....I'm hoping I can maybe get something like that from the doctor if things don't improve soon. Thank you for the encouragement it means a lot.

Craig

Hi Rhonda I came down with this virus 14 months ago and am on my 4 th relapse,i remember reading somewhere I think that you had a bad relapse? each relapse has been terrible and put me back in bed,this last relapse now feels as bad as at the beginning and ive been in bed for 4 weeks ,is it normal for this to happen and how long do you think it will last,im feeling desperate,my body cannot take much more of this,i already have ME/CFS,had that for about 15 years but this virus is much much worse,i hope you have continued to improve ? xx 

 

Diane, so sad to hear you are suffering the attacks of this horribke virus. I can't say how long your relapse will hold on. My last severe relapse lasted 4 long horrible months.

May I suggest that you try to do something you enjoy everyday. Even if it is only for 5 minutes! Be selfish as possible putting your recovery at the top of your priority list. This is not to push or shove yourself to recover. It is to accept where you are, acknowledge it and listen to your body. Every accomplishment begins with the decision to try. I am doing great but still have to pace myself. My relapses became less and less severe. Some lasted a few days, some a few weeks and some a few hours. I believe they are a part of the recovery process for those of us who have a long recovery period. I pray you find hope, strength and courage to deal with this minute by minute. It will finally lose it's grip!

Many thanks Rhonda for your swift reply,i really do appreciate it,ive been ill with some nasty things but this horrid virus beats everything,i really thought I was on top of things a month ago and even though not back to pre virus I was able to pop out in my car into the village where I live and just go in a couple of shops (charity shops) I love them!! so discouraging when it knocks you for six again isn't it,unfortunately I don't have any help as hubby passed away so its just me and my 2 doggies,(both on the bed with me)!! I think the acute symptoms have calmed down now the fever and dizziness etc but im very exhausted and having to spend most of my time laid on bed,taking my vitamins etc and doing relaxation videos,its weird how the anxiety comes with this virus isn't it and when you start feeling better it goes,at least I can get downstairs now and let dogs in garden and then back to lay down,could barely make it to the bathroom 2 weeks ago so I suppose that's a bit of improvement!! I hope your right Rhonda and it finally loses its grip,thanks again,by the way im 59 and didn't get the sore throat but everything else !!

Hi Diane,

Rhonda's words are so true I couldn't write them as articulately as her, but I totally agree. I know you are suffering right now Diane, I just really hope and pray that this horrible phase you are going through settles down soon and you can see improvement and recovery manifest really soon - I am trusting God with that and still praying for you - and believe that you WILL get that breakthrough. God knows you are weary and have been trying so hard and showing courage for so many years and need some help right now - it's hard when we don't understand why things are happening the way they are, or when God doesn't answer our prayers in the way we expect or at the time we expect, but believe me Diane He does hear your cries and WILL answer your prayers, and I believe He's going to get you well again - hang in there and thinking about you still. You have been through so much and I just pray God can help and guide you and strengthen you - I see such strength in your messages and how you have been coping, even though you may not feel like that yourself at times - God sees that too and I believe He is working on your circumstances right now and that He has a marvellous purpose for you ahead, and it involves you being well and healthy and happy again. 

Do keep in touch and let us know how you are doing, and remember you have friends on the forum here to talk to or message if there are any real low or lonely moments - and if there are any good friends / family members too you can trust and talk to, please do that Diane as this is too much to carry yourself - and ultimately I believe God will lift the burden.

Thinking about you and remember just rest and cope with one day at a time each now, and God will take care of the bigger picture.

Craig

It is marvellous to see a post from you Rhonda, I often have wondered how you are doing and how your trip away went / has been going? I hope that you had a really good time and that your health is stable and strong at the moment. Still thinking about you and valuing your wise and Godly words and advice to me and everyone!

Craig

Aww Crag thank you so much for your kind words yet again,its so nice to chat to people that really get it,i chat to my dad every day on the phone and he is very understanding bless him,he must be sick of hearing me going on about how poorly I feel for last 14 months !! we are having a lot of problems with my only brother at the moment who has been suicidal,its been so stressfull,couldnt have come at a worse time when im in the middle of a relapse,dont think all the stress from that has helped,i hope your doing ok Craig and been thinking about you too and wondering how your pain is?

Hi Rhonda,

I have read some stuff about you and your journey. 

I’m hoping that you are much better! I was wondering if you are fully healthy yet? If you are, how long did it take you?

It’s been 7 months for me so far, and at month 3 I felt about 70% healthy again, but then it all crashed and for 4 months just getting worse and worse. I’m so worried that I have CFS, because it feels like it can never get back on track how it was. 

Hi Young Boy,

Just a word of encouragement - I have read a lot of stories on the forum over the last two years, and although every situation is different and everyone's rate of recovery is different, I have read a LOT of stories of people who struggled badly and had awful and long setbacks within the first 6-9 months, but then went on to make a full recovery, with a common time frame for the start of full recovery being in the last quarter of the first year and the first quarter of the second year. So remember there is hope today and I truly believe that you won't have to go through anything like that last 7 months again. 

Hang in there and thinking about you - and hoping Rhonda can offer some words of wisdom, she has a gift for doing that for sure.

Craig

Hi youngboy,

im at just over 18 months and feel normal most of the time now, I can just have some days when I feel a bit exhausted but overall I'm excellent.

the days when I feel not so good can really upset me sometimes, as I think is this really still happening now?! It's frustrating to say the least. my mum says it will pass and just deal with what you have now as that is all we have, 'now' so I have to adjust my thinking as to what I can do and it does make a difference. If all you can do,right now is small stuff then start with that....... Slowly do a little more when you feel a bit better. I'd don't believe you have cfs, you are still early with glandular fever and it can take a long long time to get over. Just do the now and focus on what you can do not what you can't, it will get better over time, I need reassuring of this all the time...

year one was horrid.....year two is a massive improvement..... You will get there, I believe you will.

caroline xx

Hi Caroline and Craig, 

Thanks for that message! Thank you guys for the encouragement. 

I’m glad you feel mostly 100% now Caroline! I’m just so worried because for the past 4 months I have seen no improvement, and only decline. I’m so worried it’s CFS and so worried I lost all my old progress. 

Thank you for the kind words you guys, you guys really help so many people. 

Hey Young Boy,

I really do agree with Caroline that you are not going to have anything like CFS, and that you are still right in the midst of your body getting to grips with this virus, which can be the phase where things feel like they are getting worse and you feel so awful - but this doesn't last forever, it really won't and I just want to reassure and encourage you that I still believe too like Caroline does that you are going to get fully better - just focus on one day at a time and coping with the challenges of each day, and let God look after the bigger picture - and He will look after that Young Boy and protect you and lead you safely out of this horrible time into a healthy and happy place again, I really truly believe that. You're young and God has got lots of amazing and purposes for you life!

Caroline, it is really good to see a message from you too. Goodness you have been through the mill with this thing. Just want to offer some encouragement too, that after 18 months although I was doing much better, similar to you, I still felt quite fragile physically and emotionally, especially during periods of stress. From the start of the illness and going off work, it took me 2.5 years to have the confidence to be working full-time and at full pace again, for much of the time before that I was part-time and building hours up again. Just want you to know that for me there was a real difference between how I felt after 18 months and how I felt a further year down the line from that, and that things do continue to improve until you get to a stage where you just feel normal again and your body can fully cope and doesn't have such setbacks and things.

Thinking about you both and believing in recovery for both of you!! And Young Boy remember these first 7-8 months are by far the worst - God willing you won't have to experience anything as intense or horrible as that again - just trust God and keep telling Him you needs and asking Him for help and healing and recovery.

Craig

Hi Diane,

Thanks so much for your kind words and concern for me even though things have been so tough for you and your family lately. I see such wisdom and goodness in you Diane, I believe God sees that and is going to get you and your family through everything that's been going on and will protect and shelter you and lead you to a safe and hopeful and happy and healthy place again. My pain has been up and down, had some good days lately and also a few down ones too, I too often get too caught up in my own situation and forget how lucky and blessed I've been and am compared to so many people. Grateful for all the help God has been giving me. 

Oh do keep talking to your dad Diane - it's so important you can talk to someone you trust and not deal with this on your own. My mum has been such a rock for me too, she's been an amazing listener and comforter to me and I don't know where I would have been without her, she is a blessing from God. I'm so sorry to hear about this awful time your brother and family are going through, I will keep you and your family in my thoughts and prayers Diane. I do believe God is working in your situation right now and that the manifestations of this will be seen - He is a good God and wants you and your family well and joyful again - I believe for you Diane even if you are struggling to believe it yourself right now. 

Thinking about you and hang in there Diane!! Really hoping for a good and settled day and weekend and coming week ahead for you. And remember get plenty of rest, look after yourself too right now as well as thinking about everyone else, taking care of yourself is so important and try to give yourself 'me' time each day to do something relaxing and stress free which helps take your mind off the situation - it can be so good for the soul and you deserve it so much Diane.

Craig

The other thing Diane is I really hope that your brother is able to get the right support. Do encourage Him to use all the things that they have on offer to help, the Samaritans, Breathing Space, Choose Life (not sure if some of them are just in Scotland or not). Contacting mental health charities can also make such a difference, often you find these people much more compassionate and easy to deal with that doctors and things. Hoping your brother can get the right help and treatment and medication right now. Thinking about you and praying for His recovery too in Jesus' name.

Craig

Thank you Craig I will reply in more detail later on as ive just woke up !! just wanted you to know I had seen your replies and to say thanks

 

Oh you'e very welcome Diane. Please don't worry about feeling like you have to write a detailed response or anything. I know how hard it is to do anything when feeling so unwell, and just want you to know I'm thinking about you and rooting for you, and keeping you and your family in my thoughts and prayers at this time, and still fully believe that things are going to get better for you and your family.

Craig