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I'm doing much better. It's time the medical community get on board, and start preparing mono patients for the hell ride they are about to embark on. So much of my anxiety and fear could have been avoided if I had been prepared for the possibility that my recovery could take years and not weeks/months. Sure, most patients recover far sooner than this, but many don't.

The internet has been a blessing and a curse. You find the horror stories, but you also find stories of hope like I always try to provide. Neither would be necessary with proper guidance from our Doctors.

If you are like me, you should be hopeful, and I'm sorry if you're not getting proper reassurance from your Doctor. The EBV virus is sneaky and nasty. It can cause all sorts of symptoms upon initial infection and leave your immune system wrecked for awhile to come.

So when you start having more "good" days then "bad" days. Get out, do things, try to live your life and THIS will speed up recovery..

When the bad days still outweigh the good ones - buy an Xbox and a Netflix membership..



Peace out
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replied December 18th, 2015
What I can say after 3 years - there are no bad days left anymore, even though I had prepared myself mentally that I'd have to accept the occasional bad days/moments till the rest of my life.

After a really shitty 2-year period, I don't even think about my limits anymore. I play soccer twice a week, I play badminton and I try to hike almost every weekend. I ran a 1/4 marathon in April, and next summer I'm planning a 3-week-650km hiking trip.

I've never been so active in my life, which is awesome considering the fact that just 18 months ago I was planning every effort and I was constantly under stress, think about negative implications which the activities I had planned would have for me in the subsequent days.

Not anymore - there is life after mono and this life is great!
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replied December 18th, 2015
What I can say after 3 years - there are no bad days left anymore, even though I had prepared myself mentally that I'd have to accept the occasional bad days/moments till the rest of my life.

After a really shitty 2-year period, I don't even think about my limits anymore. I play soccer twice a week, I play badminton and I try to hike almost every weekend. I ran a 1/4 marathon in April, and next summer I'm planning a 3-week-650km hiking trip.

I've never been so active in my life, which is awesome considering the fact that just 18 months ago I was planning every effort and I was constantly under stress, think about negative implications which the activities I had planned would have for me in the subsequent days.

Not anymore - there is life after mono and this life is great!
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replied January 16th, 2016
I want to update as well. I am with sporque and ssganev... things do get better but it happens sooo slowly. My first year with mono was pure hell on earth.. looking for answers with fear and anxiety controlling my life. I had no help from physicians. Everyday was a struggle with intense relapses and horrible symptoms.. symptoms that made me think I had something worse or I was never going to get better. After about a year and half, which is recent... my relapses still occur but they are not as intense and they are more stretched out. However, I am not out of it. When you feel better, you almost forget how bad you feel when you relapse, and when you relapse, you think it will never end. but, it does, good days come again. these forms have given me hope where I could not find any anywhere else. If you are an adult struggling with mono, please have hope... it will get better.
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replied February 11th, 2016
Bless you guys for sharing your positive stories Smile
I am on month 17 and still feel pretty rough at times, 11 months in I had a relapse after a very stressful period of my life which involved getting kicked out by my parents. I feel I am still working to get back to the pre-relapse level but I'm on my way Smile
I do a lot of meditation now and try to always keep my spirits up and know that one day I will be fully/ close enough to fully recovered and a much stronger person for having battled with Mono!

Have a great day everyone!
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replied April 28th, 2016
Hi Sporque and fellow EBV sufferers,

I recently got diagnosed with EBV (1.5 years after experiencing the major symptoms - fatigue, depression, illness after illness, swollen lymp nodes, etc.)

I have recovered 90% but I still have nerve and muscle pain which seems to be possible side effect of EBV from this thread (http://ehealthforum.com/health/ebv-nerve- pain-t413089.html). Also a thread that spoke highly of Sporque's advice and led me here.

I'm curious if anyone has any information on how to battle this! I have been to 20+ different doctors and spent 1000s in medical bills to find a solution. The pain is primarily sciatic pain and pain in my arms / wrists. Also just on the right hand side.

Any advice, reading material, or experience would be greatly appreciated!

Thanks,
Kay
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replied April 29th, 2016
I have major ringing in head, they said it's neurological not my ears, neuropathy, bone deep pain and muscle pain that no human being was designed to suffer from. I also can't exert myself at all. Only thing I tested positive for was EBV. I had no other classical EBV symptoms at all. Doctors keep telling me it sounds like lyme disease not EBV and just throw their hands up in the air.
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replied April 30th, 2016
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Your Doctors should be treating you, not just giving suggestions. Are they still doing testing? You could always go on Doxycline for a few weeks and if your symptoms improve it was Lyme.
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replied April 30th, 2016
They just tell me it's anxiety which I Do not believe. It's amazing how many doctors are qualified to diagnose anxiety these days.
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replied April 30th, 2016
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I assume they've done a complete blood count, and those all came back normal? They did do a test for Lyme or no?
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replied April 30th, 2016
Experienced User
I know it's a slow process, but the fact your recovering should give you reassurance. What I can tell you is the nerve pain is something I've heard many times before, oddly seems to be a residual symptom that Women experience more than Men. I was in communication for awhile with a female with the exact same issues and she is now fine.

I'm not sure what self care your doing, but I highly recommend keeping a low stress level and even though you should avoid strenuous exercise you should get some.
Avoid getting anxious about this like the plague, many others will tell you it amplifies all your symptoms. Mono causes anxiety and anxiety causes mono to be worse.

Just keep in mind this can be a slow recovery, but relatively speaking thinking of myself and others that have had this, 1.5 years is not that long. As a LAST resort you could talk to your Doctor about a Lyrica prescription - it works for nerve pain and will help your mood if your having any anxiety or depression caused by being unwell for so long.

Hope this helps, and most important you need to tell yourself everyday you'll be better, because it's true..
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replied April 30th, 2016
They gave me lyrica. It helps me sleep but doesn't really do much for my symtpoms. It actually causes more chest pain and high blood pressure.

The only drug that helps is ativan and I've actually sometimes thought maybe it's not even EBV it's ativan withdrawals when I don't take it.
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replied October 20th, 2017
Hi!!! I’m so glad to hear that the woman with nerve pain is fine now. I have been having nerve pain for her last ten months and have been test for Lyme and ms... and every single thing out there and I came back with recent reactivated but now dormant viruses- ebv cmv and hv6. The naturopath and nutritionist I see believe the ebv is causing the nerve pain. Do you have any information as to how she overcame her battle with neuropathy? I tried doing antiviral treatments and vitamin injections to help boost the immune system- started to help but feels like I’m doing worse now. Tons of money spent but I’m not sure if I am ever gonna get better. I’m pretty sure that my pregnancies and high stress level is what caused all this. ;(
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replied May 2nd, 2016
I have had mono now for over a year and half. My doctors are calling this chronic fatigue syndrome.. which I kind of laugh at. ... its active mono, simple as that! Some doctors don't believe in chronic mono nor do they want to say its that because they know there is nothing to do for it. Anyways... off my soap box... Jwark.. I have all the nerve symptoms. Mono has really messed up my nervous system. I have terrible anxious legs at night and nerve pain down through my legs to my heels... The neck pain is the worst for me. I have muscle pain that radiates from my neck to my lower back. And then of course, I still get the flu like symptoms here and there. The illness, for me, has been unpredictable. I have very good periods and then bad periods. I have been on cymbalta for the pain and depression that has started with the illness. It has actually helped quite a bit. But, I have heard that lyrica is also good for nerve pain. I hope you feel better soon. Go with sporque on this one and believe that you will get better.. because you will. I have come a long way since I first got sick and I do feel that there are more good days. Take care.
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replied June 15th, 2016
I was diagnosed with iron deficiency anemia last fall and then mono in April. My iron is cured now but I have felt awful for so long that I have no idea when the mono started. I have had crazy symptoms. No sore throat, coughing, high temp. I have had nausea, vomiting, anxious, and tons of neuropathy. I've not had nerve pain but tons of numbness and tingling that moves around a lot, mostly on my right right arm and leg, and spine. I've seen tons of doctors had ct scan, mri's, nerve conduction study, and more bloodwork than you can imagine for a nurse practitioner to finally do ebv test. The fatigue and numbness tingling Are the hardest. I've taken lots of time from work but I can't lay around forever. So frustrated! I have to work next couple of days and my body needs to get better already, I know I've had the mono at least 4 months. I'm worried about pushing myself but I have to keep my job.
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replied June 26th, 2016
Experienced User
Lovebmom wrote:
I was diagnosed with iron deficiency anemia last fall and then mono in April. My iron is cured now but I have felt awful for so long that I have no idea when the mono started. I have had crazy symptoms. No sore throat, coughing, high temp. I have had nausea, vomiting, anxious, and tons of neuropathy. I've not had nerve pain but tons of numbness and tingling that moves around a lot, mostly on my right right arm and leg, and spine. I've seen tons of doctors had ct scan, mri's, nerve conduction study, and more bloodwork than you can imagine for a nurse practitioner to finally do ebv test. The fatigue and numbness tingling Are the hardest. I've taken lots of time from work but I can't lay around forever. So frustrated! I have to work next couple of days and my body needs to get better already, I know I've had the mono at least 4 months. I'm worried about pushing myself but I have to keep my job.


Dedicate the free time you have to resting. At work, you'll have to pace yourself. It may take 6 months to 1 year for symptoms to resolve. Longer if you don't rest.
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replied August 12th, 2016
SPORQUE!
I am so glad to have finally found the "recovery blog" where there is news of people who have recovered!
This is encouraging, thanks for posting all these streams - I am a year in to this - trying Paleo Autoimmune diet now!
Thanks
PETE
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replied August 15th, 2016
Experienced User
You're Welcome, keep up the good fight!
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replied October 1st, 2016
Hi there,
To those that have recovered, is it something you did (a protocol) or do you think it just ran it's course?
I've been doing this since May 2012! I have had some very good days, but the bad days still exist...what a roller coaster ride! I've been doing this for 4 1/2 years! I want to mention that stress plays a big part and causes relapse, the EBV is an opportunistic virus and loves to get you when you're down! So recently, relocating out of state did not help, lol! I've managed to control my anxiety (with L-Theanine 200mgs twice a day), but I still feel like a hypochondriac from all of these crazy EBV symptoms.
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replied March 25th, 2017
Mono hell
This post-mono period is real hell, it's so long and bad you don't even imagine it going away.

For me it started 5 months ago with enlarged and infected tonsils, body pains, fever and back head bursts of ache.
The fever and tonsil infection went away in 4-5 days and then all the other problems began: body pains, tremors, numbness, fasciculations, insomnia, aggressive IBS, heart palpitations, brain fog and weakness/malaise.

Now, 5 months into this, the IBS, body pains and insomnia are mostly gone, but I still suffer from fasciculations, weakness and malaise.

I've interrupted my job 3 times by now and I also work as a teacher, which is a nightmare in these circumstances. I still suffer from malaise, tremors and fasciculations if I exert myself physically or psychologically. I would need 2 free days after each day of work or only 1-2 hours of work per day but I somehow have to cope with a normal program.

Blood tests and other tests are all ok or ok-ish, except Epstein Barr which indicate a past infection (although some of the doctors say it was older than my problem and not repated). So doctors/family/colleagues are all like "c'mon man, cheer the f.. up, what's wrong with you? Be a real man!" and most doctors try to blame it on my psyche and give me benzos and other bad stuff. I'm not depressed, I've got a very slight anxiety wich only comes at times, when my symptoms are the worst. I even think I'm pretty strong, as I'm still pretty calm and haven't jumped off a bridge after 5 months of this hell in which life doesn't make any sense (no hobbies, no fun and work is torture).

The scariest thing is when you see people living with this for 5 or 10 years that say they haven't really recovered.

I am also shocked that most doctors don't understand this virus and some don't even know what it is (my family doctor didn't really know what mono or Epstein Barr is, I had to explain to her as she thought they were 2 unrelated diseases, she said "So you caught mono and then the Epstein or what? Do you still have both?" I was like "what am I doing here?!") But a lot of family doctors in my country don't know anything. Still, the specialists (neurologist, infectionists), even if they know what mono or Epstein is, they don't believe they cause such problems and try to put you on addictive and harmful drugs, since they believe it's just depression/anxiety/lack of motivation.
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