Posted , 5 users are following.
So to start this off; I got mono back in late March from this girl I was dating. She was sick for a week, I got sick the week after. I didn’t know it was mono and oddly enough she said she got tested for mono and she didn’t have it but I did. My symptoms were terrible. It started with pain in my right eye, then a bad headache for two days and then finally the sore throat with a swollen gland on the right side with fatigue and weakness for a whole week. I was about 138-140 and am now 125. So it was pretty bad weight loss. After that first week of bad symptoms it was better but ever since then I’ve been getting random flare ups usually consisting in my gland hurting and being fatigued and weak. First off I don’t even know how mono could be so persistent because from what I read, flare ups are rare but I still feel the symptoms to this day. I could do about 12 push ups and my gland will hurt and I’ll feel extremely fatigued and weak. But this flare up I’m experiencing now is different. I noticed about a week ago these little red marks on my arms body and neck; I have eczema so I’m use to rashes but this one is different, first off it doesn’t itch and I was pretty concerned by how it looked so I went to the dermatologist and she said it looked like psyriasis roseca. Now me being dumb I didn’t mention I had mono so she just said it could be from anything. After that appointment 2 days later I start getting the flare up again; gland hurts, I’m very tired and weak and I have a headache plus these rashes. I also have ocd and anxiety, so I was thinking maybe anxiety is making the mono stick around longer which leads to these flare ups but I’m just worried I’ll be dealing with ebv for a long time and I’m wondering if anyone has any insight on this.
0 likes, 17 replies
craig07920 greg11056
Posted
Hi Greg,
So sorry to hear you've had such a hard time with mono the last 6 months, it really is an awful experience to go through and I empathise having been through it myself many years ago. I just want to write to reassure you that what you are going through is classic and often very normal for mono, it took me 9-10 months to see a major turning point and to start to see full recovery manifesting, but full recovery did come thanks to God - want you to know that it is very normal to go through months and months or feeling this way, with all these horrible symptoms you describe, many of which I had too, but then go on to make a full recovery.
I remember feeling so weary and tired of the whole thing after 6 months, wondering if things would ever get better. But they do Greg, it's just this virus unfortunately hits the body so hard it takes time for recovery to come, but you definitely will recover I truly believe that, given my own experience and having read similar of so many others who were at the same stage after 6 months but had made much more progress by a year and were on the road to recovery. Timescale is different for everyone though, some recovery quicker than others it seems.
Remember try not to overdo things right now, if doing physical exercise or whatever be very careful as sometimes trying to push through this thing can cause these kind of setbacks. Fighting this virus doesn't mean to say you have to be in the face of it all the time, sometimes with this you just need to take a step back and allow your body time and space and rest to recover - it's frustrating I know, but you most definitely will get back to full health again - and these first 6 months, in my experience, were BY FAR the worst and most intense, God willing you won't have to go through anything as horrible or as severe as that again, and flare ups and setbacks will come less and less and be less intense as time goes on, until you reach the stage that you feel strong again and your body resilience has returned - it definitely will Greg, hang in there and thinking about you and trusting God with your healing!
Taking vitamins and herbs helped me in my recovery, a good strong multi-vitamin per day (I take Immunace Extra which is on sale from Boots and other places here in the UK), higher doses of Vitamin C (1000mg-3000mg per day), a B complex vitamin per day (good for energy levels and stress and nervous system) and immune boosting herbs like oregano, siberian ginseng and echinicea. Also 1/2 teaspoon full of baking soda in plain water and drinking that once or twice a day (on an empty stomach) for a week or so can also be very helpful in the body fighting viruses.
It's only understandable you would be so worried and anxious over this - I was too and am a worrier also, but remember you ARE going to get through this and this WON'T last forever - better times and recovery is on its way for you, I truly truly believe that thanks to God. Do keep in touch and let us know how things are going.
Craig
greg11056 craig07920
Posted
dominika20801 greg11056
Posted
Sorry that you are having to go through this. I believe I first started showcasing symptoms around March and got really bad in may/June/July. I am much better now but still not 100% and have to watch myself and take it easy. For many people this virus sticks around for months, which is something doctors will not tell you. They assume that for most people it will only be a couple weeks of fatigue and swollen lymph nodes but so many of us experience different symptoms and for longer periods of time! While personally I never developed a rash, I have read many posts on this forum of people who have, it doesn’t seem that uncommon of a symptom so I wouldn’t stress out too much over it, but if anything changes or hurts definitely go to a doctor. As for the anxiety, this virus gives it to everyone, even to people like me who have never had anxiety problems! And absolutely the worry and anxiety make it harder to recover, so finding ways to cope and calm down is very important. Remember, this is not forever and you WILL get better, so try your best not to stress. everything you listed seems typical of mono so just make sure to take it easy, eat well and get rest.
Take care!
craig07920 dominika20801
Posted
Hey Dominika,
I was just wondering how you are doing, I'm glad to read that you are seeing some improvement and really hoping and praying that this is the breakthrough that is leading to full recovery for you, as I know you've been through such an awful time with this - you've shown courage Dominika and I still believe that you are going to fully get there, thanks to God! Let us know how things are going and thanks as always for the words of encouragement for everyone.
Craig
dominika20801 craig07920
Posted
thanks for the kind words, I have been doing much better these past couple weeks. Still have moments of tiredness/fatigue and anxiety and pounding heart but not nearly as intense as before. I have been doing a bit of work and I am returning to school in a week so hopefully my energy keeps staying consistent and getting better!
craig07920 dominika20801
Posted
Thinking about you both Greg and Dominika,
Dominika is right Greg that this thing does get better with time, it's a very natural response during this to feel so discouraged and depressed at times and it's so hard to deal with. But remember this is an illness that passes, and I truly believe you are going to get better. Even if full recovery does take a few more months (which I hope it won't), remember that recovery DOES come with time and of course from God.
Hoping for a good and settled day and weekend for you, the up-down zig-zag nature of this is so frustrating - it's like a rollercoaster I know, one minute you're up because you've had a good day or week or whatever, and then it seems to go backwards for no reason - but this doesn't last forever, things do even out and you will get to a stage where the setbacks don't come any more.
Hang in there and still fully believing in recovery for you Greg and for you Dominika.
Craig
craig07920 dominika20801
Posted
That is really good to hear Dominika, I am keeping you in my thoughts and prayers and rooting for you, and trusting that God is working in your situation. Hoping that school goes well and remember just take things slowly and build things up and don't push yourself too much too soon - things WILL continue to get better and better as time goes on, I truly believe that!
Craig
greg11056 dominika20801
Posted
craig07920 greg11056
Posted
Hey Greg,
Yesterday sounded like a real hard day to go through, those kind of days are so hard to get through and are so draining. I really hope today and the weekend and coming period can be much more settled.
I had the same frustrations with doctors when going through the virus too - they told me things would be fine within 4-6 weeks - too many doctors just go by their text book on this virus and don't fully understand how the post-viral effects of this can be so debilitating and go on for much longer. But remember things do get better Greg, they really do. Goodness knows you must be so tired and weary right now, hoping that the blood test results can reassure you and offer some hope and help. Hoping that the rashes clear up too, I have read a number of people on the forums here talking about rashes with mono so it certainly seems like it can be a symptom caused by the virus, but you're doing the right thing seeing the doc and getting it checked out - even if they're not being that helpful at least you are doing what you can and hoping they can be more helpful next time.
Thinking about you and still fully believing you ARE going to get through this and get better. Hang in there!
Craig
Dodge81 greg11056
Posted
I've been ill since the start of March aswell. I had red spots across my chest right at the beginning. I'm pretty sure alot of people suffer from this and it's just part of the virus your body is fighting at the moment. I'm no medical expert but it seems everyone has the same type of symptons...just different time frames and severity....on the plus side we all gradually get better. I've increased my hours even more at work now. I still hit a slump around mid day for some reason, but then pick up again. My daily headaches which is my main problem now don't seem to be as severe, but they still linger...but I have reduced the amount of painkillers I take which is a good sign. I did go out last night to a house party, but took it easy on soft drinks and left early. I've woken up with a banging headache this morning....so I guess I still need to take it extra easy...even though I felt ok with everyone last night. I too have been suffering from anxiety....which I've never felt in my life previously. Take care all, hoping for more recovery as time goes on...regardless of how speedy it is
craig07920 Dodge81
Posted
Oh it is totally understandable to experience anxiety when going through this virus. It did knock my confidence quite a bit when I went through it and it took time to rebuild again, but really want to reassure you that your body resilience and confidence and emotionally state does get better as time goes on, it really does and there is recovery from this thing with time - hang in there!
It sounds like you have made some progress which is really good. It is great you have been able to work again and do some extra things - as you say just be wise and take things slowly and not overdo things and remember in another few months time you will be even further recovered than you are now and will reach the stage where you feel fully well again - trusting God with that!! God is the great healer, grateful for that!
Thinking about you Dodge and thanks for the good words of advice and hope for everyone!
Craig
greg11056
Posted
Hello everyone, jsut an update. I started school last week and the first day I started i got up and fekt this fatigue ive never felt. From then to today everyday after 8-9 hours of sleep I wake up fatigued and exhausted the whole day. it feels like I haven't slept at all. Add on joint pain, trouble swallowing, headache, tingling, and pain. So I wnt to the doctor yesterday and they did a liver blood test and EBV. I just got a call saying the liver test results came back high and they want to do more tests tomorrow. I'm really freaking out because how could EBV be so ongoing since I contacted it 6 months ago. I haven't felt this bad since I first got mono. Im really scared and losing hope. I'm worried about liver failure and getting chronic EBV or chronic fatigue. Im extremely nervous right now.
These are my blood test results for reference. Is this normal for the levels to be this high after 6 months? Is my reactivation normal?
Albumin 5.2 g/dL 3.5 - 5.0 g/dL
Bilirubin Total 2.4 mg/dL <1.2 mg/dL
Bilirubin, Conjugated 0.3 mg/dL <0.3 mg/dL
Alkaline Phosphatase 88 U/L <200 U/L
Alanine Aminotransferase (ALT) 19 U/L <40 U/L
Aspartate Aminotransferase (AST) <20 U/L <50 U/L
Protein, Total 7.9 g/dL 6.0 - 8.0 g/dL
Leslie2019 greg11056
Posted
Hi Greg, I'm a RN, and not giving medical advice but if I'm reading your results correctly, your albumin and bilirubin are elevated.
All of your other results appear to be within normal limits.
Do not be discouraged and talk to your doctor.
Please let us know when you have some info.
💙🙏🏼
craig07920 greg11056
Posted
HI Greg,
So sorry to hear you have been going through this tough spell right now, thinking about you and really hoping and praying things settle down soon. I know it's very hard to do and a stressful decision to make, but please do put your health first and take some time out from school if you need to - it's not easy I know, but it's important you give your body time to recover, or at least if you're at school you are getting plenty of rest around that and not putting yourself under too much pressure - be kind and understanding to yourself, that's really important right now.
I really do want to reassure you that it most definitely is very normal still to be feeling so unwell with mono / GF after six months, and then go on to make a full recovery. I was still in a terrible state with it physically and mentally after 6 months, but after 10 months I felt like things really started to change and get much better and thanks to God was able to recover fully with time. I'm not saying it will be that long for you, everyone is different, but please know that even if it takes a little time still you WILL recover and get there.
My blood tests for EBV always showed normal after the initial first blood test I had which showed it active - this is normal too and doesn't mean to say that it is anything else causing you feel now - it is not as this virus just take time to recover from. My liver function test was off too at times during this virus - that can be very normal and is most likely a cause of the mono and not anything else at all - it went back to normal as I got better and hoping and praying and believing it will for you too. And remember this virus takes time - what you're going through in NO WAY means chronic EBV or chronic fatigue - I went through all the same worries and fears and it's awful I know, but this virus really does get better with time and don't panic that recovery hasn't come yet, because it will come with time it really will!
Thinking about you and message any time you're feeling down or worried or anxious or want to ask anything (not that I have all the answers, only my own experience of this horrible virus, and knowing that after feeling so low and hopeless with it too it did get better thanks to God). Take heart and encouragement from Leslie's words that all the other blood results are normal, that is a sign that most likely it is just mono and nothing else causing this - but you're doing the right thing checking in with doctor and getting these tests done, do keep in touch with them and remember you ARE going to get better - I truly believe that and for now just hang in there and cope with one day at a time, it won't always be the way it is now and better times are ahead.
Craig
greg11056
Posted
Hey all, its been a bit but i have updates on whats going on with everything. I have been tired every second every day, the fatigue is constant which it wasn't like before. The rash I had mentioned last time went away and occurred again last week. Went to the dermatologist and doctor and heard the same thing again that its pytiorasis roscea. That theres not much to do but rest and give it time but I feel worse. Nothing is seeming to work. I have a very easy life yet I am exhausted for every second. I feel that i have chronic fatigue and on top of all this the OCD and anxiety i deal with has gotten worse. I'm just concerned on how long this will take and am open to some advice on things I could do to get better. It has been 8 months now dealing with EBV.
Dodge81 greg11056
Posted
Hi Greg, I'm at the same time period as you as I got sick beginning of March. I wouldn't worry about chronic fatigue. I spoke to my doctor last week and she said she could refer me to a chronic fatigue specialist but feels it's too soon, but she thinks they might only be able to help by setting a graded exercise plan. Lots of people post on here saying they got better around the 10 month mark, 1 year, 18 months etc. The key is is to just keep focusing on each day as it comes and try not to stress or get down. I know it's woo difficult as I do the same, but just need to keep the faith that you will get better soon. whilst it's important not to over do it, it is important to do something which can help take you mind of it. I'm back at work now, which is a struggle but I like to think it keeps me occupied. I'm doing daily brisk walks for 30 minutes, which I hope will be my body in some kind of shape and then finally to eat well and drink plenty of water.
craig07920 greg11056
Posted
Hi Greg,
Oh you've had such a hard time and it's only understandable you are so tired and weary and drained by this going on since March - really empathising with this thinking back to my own experience of the virus.
Like Dodge, I want to absolutely reassure you that what you're going through is common with mono - after 8 months I was still feeling unwell and so frustrated at the lack of progress, and thinking that I would have to adapt to this new 'normal' and worried about chronic fatigue. But I seen a real major turning point after about 10 months Greg, not saying it was an overnight thing but gradually from then things really started to get better and although it took a while to get full strength and confidence back again, I got there thanks only to God. There is a real difference in my view between post viral and chronic fatigue, and what you're going through Greg is most likely post viral, which can take a long time but it does absolutely fully get better - and the first year can be so awful but truly the intensity of this will lessen and a turning point will come. I remember thinking my body resilience will never return, there was no way it could feeling like I did, so fatigued and unwell - but it did thanks to God Greg, and yours will too I truly believe that.
So please hang in there Greg, don't give up and remember keep resting and removing as much stress as possible, and remember there IS hope and recovery from this thing - take it from me as someone who felt very much in the same boat after 8 months - recovery time just seems to be different for everyone and hoping and praying for that breakthrough to come real soon - but truly you will get there you really will I believe that given my own experience and how I've read so many people experience recovery between that 9 and 15 month phase.
Take care and hang in there - thinking of you and let us know how you are doing. And of course vitamins and herbs can help a lot, a good strong multi-vitamin per day, immune boosting herbs like siberian ginseng, echinacea and oregano, a B complex vitamin per day (great for fatigue and nervous system) and higher doses of Vitamin C (1000mg-3000mg per day) and Vitamin D during the winter especially.
Craig
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