My life with mono. When will it get better?
Posted , 7 users are following.
Hi Everyone!
First of all I just want to say thank you to all in this group cause thank to many useful info here I feel like I am not totally alone struggling with nasty EBV virus.
This post is more to let me say how miserable it feels at times : (
I was diagnosed with mono first time November 2017 when it started like mild flu with sore throat and muscle pain. Soon after those symptoms went away, my lymph glands on neck got swollen. Since Nov, I have been on and off with various symptoms and control blood tests done 3 weeks ago still showed virus is active : ( Many lymph nodes around my body are swollen so neck and armpits. I got couple ultrasounds and each time reactive nodes were confirmed. I do not have to tell you that its so easy to develop anxiety when dealing with mono.
Sometimes they are less swollen and sometimes more, they really change each day. Is it normal? Have someone experienced the same with mono?
I have days when I feel more or less fine and I can do things but then I have days when I feel quite poor. I am constantly having feeling like I am going to have a flu but in the end I won't get it and if I get more sleep and rest, symptoms will go away and return back after couple days. Today I woke up having sore throat again.
Is this still normal for mono? My doctor said it should go away after 8 or so weeks but its been 7 months and I still suffer the same. That makes me worried if this is more serious than my doctor might think.
Have you been feeling hopeless at times too? I feel useless like if I am not doing enough to get rid of this but true is that I am not sure what else to try.
I know maybe its harder to say something back to this post but I guess I am only searching for some reassurance that all happening is still kinda normal for mono virus. And of course I want to hear that it will get better : )
When you look back at your journey with mono, what was the thing which helped you the most? Maybe there is still more to try which I haven't tried yet.
Thank you and have a good day : )
PS - I am sorry if my post has some grammatical mistakes, I am not from English speaking country.
0 likes, 13 replies
craig07920 jani67888
Posted
Hi Jani,
So sorry to hear you've been going through such a terrible time with mono. It really is a horrible experience, I really want to reassure you that what you are going through is normal and you will make a full recovery. For me, it took about 9-10 months to start to see fully recovery, even though the doctor said 6-8 weeks at first!
It's awful to feel so down and hopeless. There is always hope because of God though. I have been feeling similarly down and panicked lately due to back pain for the last year. It has affected me badly having to be off work with my confidence and everything and just lately been finding things too hard to bear. I do want you to know that with mono there IS hope and there IS fully recovery, even after this length of time Jani. Taking vitamins and herbs really helped me - a good strong multi-vitamin per day, high doses of Vitamin C (1000mg-3000mg per day), B complex (for energy levels and brain fog) and immune boosting herbs like siberian ginseng and echinicea.
Thinking about you and praying that God will guide us all through our hard times right now.
Craig
jani67888 craig07920
Posted
Thank you Craig! Now every reassuring feels hopeful cause its so easy to get down the path thinking all in negative way. I would not have ever believed how feeling badly physically for longer time affects mind too. At times I am so negative that I am even surprised that its me.
I am glad you are over the worst now and I hope I will say the same soon.
I started taking some extra supplements too while ago too but so far I haven't noticed any difference. I guess it takes time.
Thank you again for nice words : )
craig07920 jani67888
Posted
Hi Jani,
It's so understandable to be feeling so down and low about this thing, I was exactly the same and have been like that lately too with my own woes. Oh there definitely is hope and recovery for you Jani, I totally believe that I really do. Just take things slowly and cope with each day at a time, getting through a day is an achievement when dealing with the horrible symptoms of this virus - and remember it doesn't last forever (even though it feels like it at the time) and you will get back to full health and body resilience and happiness again - trusting God with that.
Craig
kris0633 jani67888
Posted
Jani,
It sounds like we are having similar journies with Mono. I was diagnosed a month before you and had the same symptoms. The main differences are that my lymph nodes aren't very bad/swollen and I have a mild headache most of the time. The overall body aches/flu-like symptoms are miserable.
In the beginning, my doctor told me it should take 2 to 3 months to recover. When I didn't get better as she said, I was told it could take a year. A year! Now I'm starting Month 9 and I too have wondered if I'm ever going to get over this. I was doing a little better and then the last few days have been bad again. That is why I came to this forum. It is comforting to hear from others that they are experiencing similar things and that they have gotten better.
I find it frustrating that other people don't understand why I'm not better. Sometimes I feel like they are blaming me because this is taking so long to get over. The doctor says to rest and drink lots of water. That's what I'm doing. Sometimes I have pushed too hard and done too much mainly because I'm having a decent day and I'm so tired of just sitting around the house so I venture out on an errand or to get something to eat. But, overall, I'm doing very little and just trying to get better. Yes, I can feel hopeless.
I hope you turn the corner soon and start feeling better!
Blessings,
Kris
P.S. -- Your English is impressive
jani67888 kris0633
Posted
Hey Kris!
First I wanted to start my reply saying I am glad its not only me going thru this or feeling the same. But then I realized it would have sounded bad even I do not mean it bad. It only gives a bit of hope seeing people who are going thru the same, knowing that I am not alone in this.
I completely understand how it sometimes feels that people expect us to get better soon. That is all we want but yet its been taking wicked long time.
When they found out about mono first last year, my doctor said that immune system would deal with it without me even noticing and she sort of brushed it off the table like if it was nothing. yet I felt so miserable and I even hesitated if I should return back to see her. Then my lymph nodes started acting crazy so I did return and she said I would be one of those people whose reaction is bigger. She also said it could take long time. Oh, I wish I had idea she meant this long time. I have days when I feel like doing nothing and that frustrates me too as I am active person. I had to stop doing workouts. Sometimes I sneak some yoga in but I usually regret it next day : ( Its really not worthy to push something.
For water, were you told to drink more than what you used to before? My doctor did not say specifically about water and maybe sometimes I do not have enough.
Didn't your doctor say that you should see immune system specialist at some point? mine said it might be option if some of the symptoms wont go away in next months. Each day I hope mono will give it up and stop bugging me : ). We all do i guess.
I hope you are having one of those better days today. Rest a lot and get better soon!
kris0633 jani67888
Posted
Hi Jani!
No, my doctor hasn't talked about an immune specialist. I also haven't been back to see her in about 4 months, so I don't know if she might recommend that to me now. When I was diagnosed, she said Mono is something they just really don't know much about. She said rest, drinking lots of fluids and avoiding stress was the way to get better.
I'm really fortunate as I don't work outside the home, but I have an active family and I've had to miss a lot of their activities. Even before the Mono, I like a low-key life and I'm happy reading a book. I feel fortunate in this regard. Although, this whole thing has been way more downtime than I would normally like. For a person who is really social, I can only imagine how difficult it would be to get through this.
I don't know how much water a person should drink a day, but I make the effort to drink at least 45 oz.of water. That's probably not enough, but I know it's more than I was drinking before the Mono started. So I figure it's a step in the right direction.
A couple months before this started, I was getting back into a good exercise routine. It was disheartening to have to stop. I'm sorry to hear that you are normally active and can't exercise now. That must feel very frustrating. I would also think not exercising would contribute to feeling down and hopeless. At least I know for me, exercising helps my overall mood.
For the most part, I feel l like the illness of Mono come in waves. In the beginning even brushing my teeth felt like a huge task. I'm so glad that is pretty much behind me. Before the set back I've had this week, I was doing a fair amount: attending my children's school and sporting events, going to church and out to dinner. Then, five days ago, I woke up with the flu like feelings: body aches, worse sore throat than usual and headache and way more fatigued again. This is the 2nd time I've had a setback that has felt like this. The last time it lasted for a few weeks and then I slowly started to come out of it. I'm really hoping it doesn't take that long again. As this whole thing goes on, I've gotten smarter and done a better job of making myself rest and not trying to push through. Surely, my good days will start to outweigh my bad days soon.
I wish you good days ahead!
craig07920 kris0633
Posted
It sounds like you're doing all the right things to help yourself Kris, just hang in there and remember God knows the bigger picture and will bring recovery, I truly believe that He will.
Craig
vancityraincity jani67888
Posted
Hi, I have also been sick since the same time as you. Reactive nodes on ultrasound. Blood test immaculate. It gets better slowly... but like you I still don't feel 100%. It is now month 7 and my main symptoms are sore throat, headache, and mild aches all over my body. At least the awful fatigue is gone. That was the worst thing ever... so hard to imagine unless you are feeling it at that moment. Even now... I forget what it feels like.... and I had it for MONTHS.
Hope you continue to feel better. This forum is awesome.
jani67888 vancityraincity
Posted
Hi!
I agree this forum is awesome. When I came here in the morning, my mood was totally down feeling like there is nothing to do or nothing more to try. I have read thru couple forums and saw others are struggling with this too. I started feeling its only me being too weak or weird : )
I have days when I do not feel so tired but I noticed it really depends on what I do during the day. Did you stop going to school/job for all the time you've been dealing with this?
I hate that it takes so long for all of us to get rid of this. But we will. We can encourage each other : )
I hope this will be all better for you very soon. Good luck!
vancityraincity jani67888
Posted
Yes... I stopped working completely for 5 months (luckily I work in education so I was able to take time off and not lose my job). It was so hard to take the time off work because I LOVE my job and being busy... but I was too weak and sick to work. I am now back part time... and things have been going well energy wise. I am hoping to increase my hours at work more....
Hang in there! Are you working or going to school through this horrible thing?
craig07920 vancityraincity
Posted
I've been the same Van with my back have had to be off work for such a long time and it has made me feel terrible and awful and guilty. These are awful feelings when you just want to be fit and well and working but you feel unable to - really hoping God can help us get back to work and having a good purpose for Him again.
Craig
jani67888 vancityraincity
Posted
Hi Van, I haven't stopped working thru this nightmare. My job is administrative type job but I feel I am not that productive as before so I need to take it slowly even if I do not like it at times. Fortunately, I can work from home as much as I need to so that makes it easier as i can hang out more in between working. Sometimes I wonder too if I did not make mistake not stopping to work temporarily cause each job involves some stress and maybe that stress makes it harder to recover.
You work as a teacher? I studied to be teacher but after school I did not feel ready to do it. It did not feel like for me you know. But I loved it when studying.
What is frustrating about this terrible thing is that one day I am better and think that it means I am getting better overall but next day I again feel poorly. Do you have it like that too? Its like roller coaster for me.
I hope you are having a good day toda : )
Brian_87 jani67888
Posted
hello,
just wanted to say I've been suffering from Nasty Mono symptoms and my acute stage was the worst sickness i've ever experienced. 13 days of hell with the worst migraine I’ve ever had, Brutal fever, chills, vomiting, sore neck, fatigue, nigh sweats.
Doctors thought I had viral meningitis because of the severe symptoms. They were unable to diagnose me right away. I started getting sick October 23rd 2020 and it wasn’t until it’s November that they were able to diagnose me as my lymph nodes were extremely swollen.
It’s now January 2021 and I’m experiencing the weirdest symptoms like sensitive scalp, weird burning skin irritation, and facial numbness. My latest new symptom is my armpit has become extremely irritated and not feels like it’s on fire and extremely sore.
I’m a person who suffers with anxiety so being this sick for so long I inevitably think I have lymphoma or a brain tumour or something very serious causing my symptoms. I’m normally an extremely active person who works out daily and leads a very active lifestyle. I’ve been unable to be myself and it seams every time I workout I make it worse.
Also if I drink alcohol it also seems to make issues way worse. I’m sick of being like this and fearing there’s something worse going on. Just felt like venting my frustrations. Happy new year everyone.