Mono need help
Posted , 34 users are following.
Hi so In June I woke up one morning feeling very weak. I thought I needed to eat something but when I ate breakfast I still felt weird. I ended up having my first panic attack. My entire summer was filled with ER visits for weakness, low energy, fatigue, dizziness, off balance feeling, and generally feeling unwell. It turns out I have mono (diagnosed a week ago). I don't know what to do. Just looking for others' stories and well and recovery process. It's my 3rd month and I just feel so helpless. ?? Thanks guys ! Blessing to all
2 likes, 733 replies
lisa29739 christy32934
Posted
Holy moly. I'm so glad I found this. Christy I had almost exactly the same symptoms as you. I went from a totally healthy 37 year to completely sick in late July. I woke up and was driving myself to work and I had to pull over because I almost fainted 3 times. I took an uber to work and made it through the day. ( I'm an actor- it was tough.) By day three my light headedness and general crappy feeling was so bad I went to the ER. They ran all the tests and thought I had a migraine. For four more weeks I saw several docs, neurologist, endocrinologist etc. At this point I was having multiple panic attacks- couldn't sleep. By late August my mom came in to help me clean my house and she took one look at me and said that's it! We are going to the ER and they are finding out what's wrong with you. Thank God that doctor thought to test me for mono.
Once I knew what the problem was the anxiety eased up. But I developed a terrible stomach problem which we thought was an ulcer. After an endoscopy turns out I had gastritis. All of September I took it easy. I was left with a terrible debilitating fatigue. Not brain tired, but limb tired. Arms, legs, hands and feet. The only way I can describe it is like when your arm falls asleep and it's horribly painful and hard to move. I couldn't sleep- sleeping actually made it worse- so I would wake up every few hours to make sure I was still alive.
October- 3 months in- I started to finally turn around. By late Oct. I was grocery shopping, taking kids to school, cleaning, and started auditioning again. I thought I had beat it. Three weeks later- I felt so good I tried a few basic lunges and crunches. Nothing too hard. The next morning I almost fell out of bed because my legs were so weak. It progressively got worse. Me and my family were set to fly to London on Thanksgiving for my work and then we were spending a few days in Paris. Thanksgiving morning I was so weak and ill I had to cancel. And nothing was refundable. It was a horribly low point in my life. I totally understand your disappointment for missing your trip.
The last month has been a lot of bed rest. I met with my Naturopath last week and she decided to put me on an anti viral med. Acyclovir. Plus some hard core immune boosting and adrenal support tinctures. My regular doc doesn't think I have chronic fatigue which I'm terrified of getting.
I have felt like my body is so sick and will never recover. I'm almost at 5 months. I can't tell you how much less alone I feel reading all your guys' accounts. I'm sorry you have dealt with this as well. And especially since the medical community seems to know nothing about it.
40with.gf. lisa29739
Posted
Hi Lisa,
i had to cancel two holidays to Florida this year because of gf. (I'm in the u.k) so I understand how upsetting that can be and just sooooo disappointing.
i was 40 when I got this awful virus and it has been 12 months for me now......I had good improvement at about 10 months. Really good improvement!!
Things are getting better but I'm still having struggly days/weeks.
i saw an endocrinologist and he was confident I would get over this and he said another 6 months to a year before I'm back to normal.
its horrendous, I totally sympathise.
Caroline x
lisa29739 40with.gf.
Posted
Hi Caroline! Oh man I'm so sad to hear you've gone through such a tough time. Do you get a lot of 'how did you get mono/GF at your age?' I hear it a lot. Apparently I just never had EBV before.
Have you had a long stretch of feeling normal to then relapse? That part is so hard. I'm dying to be active again. I'm usually a go go go person. I've found ways to be creative still- I'm writing- but the constant weakness is so hard.
I'm so bummed I missed coming to your country! I had never been! I was supposed to work a comic con. So much disappointment. But they have said I'm welcome back next year. I'm just hoping at that point I'll be healthy enough to go.
40with.gf. lisa29739
Posted
Hi Lisa,
ive just had three amazing weeks when I thought that's it, it's on it way out, I've totally cracked it and now I've had a downturn for about three weeks but no way near as bad as I was at the beginning of this year! Those first months were awful. Horrible symptoms.
yes, I do get, how did you get that and do they know what you've got?! Is it just gf?!? People can't understand.
it is really really hard when you have glimpses of feeling normal or a few days and then it all comes back again, it's the worst!
im also an active ballet dancing mum to three small boys! I normally can't sit still, working cleaning etc but this virus has put a temporary stop to my life.although now I'm managing school runs. Dog walks, shopping and cooking, albeit hard work when I'm having bad days!!
ive decided to rebook for Florida for April 2019, just to be on the safe side!!!
ahhh, you will get here and have a lovely time I'm sure. We have some nice parts to the u.k. Lots of wibbly wobbly roads!
youll get back to full health.....just like I will. Keep positive xxx
caroline xx
craig07920 40with.gf.
Posted
Hi Lisa,
So sorry to hear you've had such a tough 5 months with mono, it really is a horrible virus and just want to reassure you that it does eventually go away FOR GOOD.....and the period you have already been through will be the worst - don't panic if it still takes a bit of time because you will get better. Taking some vitamins (multi-vitamin, B complex, Vitamin C) can all make a difference, and remember just to manage your activities not overdo it and your full physical and mental resilience will come back again - hang in there!!
Craig
lisa29739 40with.gf.
Posted
3 small boys? AHHHHH! I can't imagine navigating this with little ones. My kids are older thank god. You are a trooper!
Yay for Florida! I bet all of this will just be a bad memory once you're enjoying the beach.
I want to see all the wobbly roads! I've only been to Ireland and I just loved it there.
Thank you for the support and kind words- it helps tremendously. I wish I had found this months ago! Cheers to a better 2018!
lisa29739 craig07920
Posted
Hi Craig! Thank you! I have a pretty cheery demeanor most of the time and I can usually talk myself out of the blues. Sometimes it really is hard with this virus and hearing your feedback is really reassuring.
I'm taking B12, D, C, licorice root, zinc and two powerful immune boosters and adrenal support tinctures. I'm hitting this thing with everything I've got. I just keep falling into the trap of 'Oh I feel better let's do ALL THE THINGS!' and then overdoing it buying groceries or doing laundry. When the fatigue leaves it feels like you've completely gone back to normal. It's so strange how sensitive it is to relapsing.
I've kept a diary and I'm seriously considering turning it into a book. A funny honest look at mono that would hopefully give people some support and a chuckle that are going through it. There's so little out there about EBV and Mono.
Glad to read that you beat it! That's amazing!
40with.gf. lisa29739
Posted
I have a year long diary!!!! I too normally have a cheery disposition and positive attitude so teary days are hard!
you sound so similar to me when I'm reading this.
yep, cannot wait to be doing all the rides in Florida. I t want to be normal......like we all do.
xx
lisa29739 40with.gf.
Posted
Lord it's nice to find someone who can relate. The diary was the only thing that got me through those first terrible months. And we have a trip to Disneyland in Feb. I'm going even if I have to go in a wheel chair! At least we will get to the front of the lines haha!
You will have the best trip!
40with.gf. lisa29739
Posted
Yeah, the diary helped and it's nice to look back on, to see how far I've come. It's easier looking back rather than forward sometimes!!
yeh, that's true about the wheelchair!! Always look on the positive
xx
craig07920 lisa29739
Posted
You're doing all the right things by the sounds of it Lisa, and just want to reassure you that you WILL get there in the end with this, most definitely. The winter is a hard slog when going through it, things will be looking a bit brighter by the spring I really hope.
I was the same as many folk on the site here, never thought I was ever going to get over it, but there comes a point when your body does get to grips of it, so don't be downbeat by all the scare stories you read on the internet of people if they haven't recovered by a certain time then that's it - it's not the case and it is normal for a prolonged period of recovery to take place with this and still get fully better - that happens for most people but because they get better they're not the ones you read about on the internet usually! So hang in there there is hope today and really hope you get to Disneyland!
Craig
christy32934 lisa29739
Posted
Hi Lisa sorry I am soo late replying to your message. I recently went back to school and my schedule has been very hectic. But yes your story sounds just like mine. Woke up one more just terribly sick. I am around 6 months too and i don't seem to be getting better although I know I am. School drains me like I'm sure having kids would drain anyone in this position. It's hard to see improvement when where going through the storm !! Message me anytime, I hope you had a good day today !
also by the way, i totally get the faint feeling. I would eat all day just to prevent that feeling. It never really helped though haha
lisa29739 christy32934
Posted
Hey Christy no worries! I can't imagine committing to school right now. Every day is so different. Right now I'm in a bit of a good period. Although no where near normal I don't feel so fatigued during the day. Night time/sleeping still brings lots of limb pain and bad circulation but I'll take it.
I ate all day too! And all night! I'd get up several times to wolf down yogurt or applesauce.
I usually am either wired or tired. It's bizarre. I had several people recommend acupuncture so I'm going to try that next. Will report back if it helps! And if this anti viral med ends up working I'll let you know that too.
I had my first cup of coffee in almost 5 months today! It was glorious! Take care- I hope you get winter break to just relax with family
christy32934 lisa29739
Posted
rhonda21886 christy32934
Posted
Hi Everyone, almost 17 months for me. It is great to experience recovery even though it is not fully manifested I fully believe it will be. So happy to hear that most are seeing that there is light at the end of this dark long road!
Craig hope you are getting relief from your back pain.
I continue to remember the ones that have EBV & you too Craig.
May we all rejoice in God's goodness and loving Grace.
Prayers for all
Rhonda
40with.gf. rhonda21886
Posted
i Saw an endocrinologist who told me (at 12 months) that this will go but it will be another 6 months to a year.
Xx caroline
rhonda21886 40with.gf.
Posted
Hi Caroline, I still have days that I'm really fatigued and my body aches. These episodes are fewer and father between . It does seem I need to look at the past month to see progress. I really appreciate you sharing the information your endocrinologist gave you. It really helps me keep my progress in prospective.
I also appreciate that you are such an encouraging force on this forum!
Progress for me is best seen from month to month...not day to day...or week to week.
Thanks, Rhonda
40with.gf. rhonda21886
Posted
Hi Rhonda,
yes, I get that, month to month rather than week to week!
i thought I'd share it as he said it to me, just matter of fact, this will go but it will be that much longer and he must have seen lots of people like me.
im glad you're steadily going upwards. Keep on climbing!!
im doing the same, doing better but still have tired achey times.
merry Christmas to you and all your family, thanks for the kind words
xxC xx
craig07920 rhonda21886
Posted
Hey Rhonda,
It really is wonderful to see your message on here, I still thinking about you and praying for you and everyone. I can only imagine what a terrible 17 months it's been for you, I just see such strength and faith when I see your messages Rhonda and for you to still remember and think about me and my back problems at the moment means everything to me, I really need that at the moment!!
Trusting God with our health going forward Rhonda, yes as you say can only take it one month at a time and just wish could see an end to it all. I want you to know that you, Caroline and Mono in particular have been such great supports to me and others on the forum and that I'm really grateful.
Thanks for your prayers as ever Rhonda, thinking of you and 2018 WILL be God's year of recovery and restoration for you - I believe that.
Craig
craig07920 40with.gf.
Posted
Hey Caroline,
Just want to wish you and everyone on here all the best for Christmas. Going through a Christmas and New Year period when feeling ill and in a dark place is one of the hardest things ever, so I just want you to know my thoughts are with you and everyone on the forum at this time, because I know most folks on here aren't really feeling like being festive.
But there is still hope because of the true meaning of Christmas. Praise to God for that.
And remember you just look after yourself each day just now Caroline, I know it's been a rollercoaster up and down, but things will settle again and your resilience will come back.
Take care and thinking of you
Craig