I just ran across these posts and I was surprised to find that my conditions are a bit similar to yours. I too first got the mono symptoms in April and it started with 3 weeks of dizziness (not vertigo but just light-headedness). Then it got better for a few weeks, but was followed by the acute symptoms - very fatigue that I couldn't do much even at home for a while. Then for the past month or so, I'm still feeling fatigue and only able to work 4 hours a day or less.

Through some blood tests, the doctor found out I'm in the recovery phase (not acute phase anymore), but I really don't see significant improvement over time for the past month and am getting quite frustrated (after dealing with it for 3 months).

I'm just wondering how your conditions are and what you found to be most effective in speeding up the recovery process.

Thanks in advance!

Iris

Ok so here's the deal - my symptoms have NOT gone away... which has been a real strain on my life.

All day every day I feel Woozy + lightheaded, sometimes it's pretty managable, sometimes it really kicks up and i don't feel well. today is a bad day for ex.

I just feel like a full body fatigue, almost sick feeling and it's a real drag.

I just started a med called CYMBALTA, helps with ANX/Depression but also some pain - I've been getting like pressure in my face, etc.

I've had 6 rounds of blood tests, MRI, seen a Rhuem, Neurologist, Naturalpath, Infectious Diseases doc etc. It's a really weird thing because there is no clinical reason why I feel still sick (so they say)

Hopefully the meds will help, but I just started today - I'll post in some days to see if they make a difference.

It seems like this mono stuff can drag on for quite some time!

Good luck, and let me know if you find anything that helps!

Michael

I totally hear you. It seems like we are in very similar situations. I also did multiple rounds of blood tests and went to see a neurologist, who didn't find anything wrong with me. The blood tests confirmed that I had mono, but then they also indicated I am now beyond the acute phase and in the recovery phase, whatever that means. They also found nothing else major that is wrong with me.

But I still feel sick. I sleep 10-12 hours a day and there are only the other 12 hours in the day that I can do stuff. I can only work 4 hours a day, so of course the finances are taking a hit and work also. I feel tired very easily, and even during my "good" hours of the day, I sometimes don't feel well enough to be productive at work (such as now). My fatigue is mostly in the upper body - i.e. tense head, aching shoulders and neck.

I was told that what I have may not even be mono, but it should go away on its own. In the nights, I would wake up with sore throat and fatigue, and I still think it is mono.

I think the toughest part is staying positive. After I have been sick for so long, it's tough not to feel like I won't get better anytime soon. I went to a meditation class a couple weeks ago but haven't really been practising since. Maybe I should go back to that or try to do things that will bring calmness and help me think positively. Talking to family and friends help but then when I feel sicker again, it's easy to get back to the negative thoughts.

How've you been feeling; is the med helping you? I hope you will get over it soon or better yet have already gotten over it! Let me know if anything helped.

Take care,

Iris

my head is always woozy, tense head - sometimes facial pain, etc. All upper body like you said.

In the last couple weeks I've been exercising, and that's been helping some. I actually excercise a little bit twice a day, keeps me feeling more fresh.

Also - I'm taking Zoloft for 1 week so far - and it definintely takes the "edge" off. I recommend it. I tried cymbalta but it made me sweaty + nauseaus.

It's been so difficult, but feeling like eventually this has to get better!

Good luck and keep me posted!!

mp

Wow my symptoms sound very similar to yours Iris.

It started 9 mo ago with some disequilibrium or unsteady feeling, feels like you're on a cruise ship, my body feels like its swaying when standing and worse with closing eyes. then it progressed to fatigued symptoms, it seems to come and go , several weeks of bad fatigue and then some improvement just to get bad again. This really sucks. I have been to a neurologist and primary doc, endocrinologist and thinking of heading to ENT and Infectious disease doctor. I have had numerous blood lab studies including ct and mri of head, the frustrating part is I am a M.D. physician myself and can't even diagnose myself. I am feeling pretty frustrated and anxious and depressed over this condition. The fatigue is so bad that I can't really function at work, needede to take some time off from work.

How are you guys doing, I really hope this is a prolonged case of mono and that it will get better soon. I am running out of patience and energy.

any help would be appreciated.

dizzy bradley.

Your symptoms do sound similar to mine. In the beginning, I started feeling dizzy (but not a vertigo) and that lasted for a few weeks. After that, I felt normal for a few weeks. Then I turned very sick and fatigue. I later learned that I also had a thyroid condition that made it worse. My fatigue has gotten better compared to that time. But just like you, it has kept me from working full time and all the normal activities. I have felt frustrated and depressed from time to time, but I seem to have handled it better after some cycles. I guess I "tried" to accept this as my situation. Also, whenever I start to get better, I try not to keep my hopes up, because if it doesn't last long, I would for sure get more depressed.

It's really tough, especially I see all the healthy people around being able to live a normal life. I think for now, I'm dealing ok by accepting this as the situation and reducing my activities even if it means doing less for school/work and taking a financial hit (I'm borrowing a lot of money to come back to graduate school...)

However, in my case, if I don't get well by say December (I've been sick since April), it will be pretty unacceptable with all the compromise I have made so far and my financial situation. So I totally understand your frustration with this prolonged situation.

Were you diagnosed with mono? I recently learned that by definition, if the mono lasts longer than 6 months, they call it chronic mononucleosis. I don't understand why mono can be a chronic condition if it's supposed to be an acute disease. I also read about the Chronic Fatigue Symptom (CFS), which has a very vague definition, and CFS should not be linked to mono, but it still concerns me.

I spoke with a neurologist and he couldn't tell me the direct link between mono and dizziness, but one theory is that the body detects the virus in the bloodstream and the body triggers inflammation in different parts and thus causes dizziness. A friend of mine ran across a publication hypothesizing that mono affects/infects the cells that support the neurons and that's why it takes a long time for those cells or the body to recover.

I'm quite puzzled about why the fatigue would last so long for us (i.e. some people only get sick for a few weeks with mono). Do you know why the fatigue could last so long, and what mechanisms are actually happening in the body? And do you think there is an upper limit on the length of fatigue with mono?

I hope you are feeling better, and it'd be great if you could share what you know about mono, i.e. what's it doing to the body and why such a long recovery, etc.

This is a frustrating situation, as no one could tell me when I will get better and after being sick for a while, it's normal to lose faith with ever getting better. I don't know of any solution except for the body to get better on its own (i.e. good nutrition, lots of rest, and trying to be calm). For help with the emotions of dealing with it, I would recommend therapy (i.e. psychologist) and having a support network. I've gone to therapy every so often when I feel like I really couldn't deal with it anymore. I was told that meditation helps with feeling more calm but I haven't tried much with it.

Sorry for the long message, and best of luck!

Iris

We may be dealing with the same condition so i am glad to find someone with similar symptoms. You can not imagine the amount of research i have done on the internet and all the reading i have done about CFS, fatigue, mono, EBV. I did find a very good article about chronic mono, i can email you the link.

I will share with you my research thus far. .. I will not stop until i find some answer, this condition is so frustrating.

My research into fatigue has been so extensive, here's my list of diagnosis which can give chronic fatigue: some of these conditions are no common, but then our symptoms are not common.

Anemia, sleep apnea, thyroid problems, addison's disease or cortisol insuffiency, lupus, infections: HIV, TB, parasitic infection, and of course mono, CMV, EBV, lyme disease, toxic metal or chem exposure, vitamin dificiency vit 12, folate, thiamine, hemochromatosis.

I am not sure my symptoms are mono related but its the only thing that fits with the dizziness and bouts of extreme fatigue.

My symptoms have gradually gotten worse over the past few months, but i am still hopeful, things will turn around.

To answer some of your question, in my opinion, I have some type of virus which has affected the inner ear which is responsible for balance.. such as the diagnosis "viral labrinythitis" and this virus is also the cause of fatigue , it affects the part of the brain which results in severe fatigue. Also since the virus affects the inner ear, the body has to expend a lot of energy to deal with this dysequilibrium. Our bodies should have cleared the virus a long time ago.

The article about chronic mono did mention symptoms lasting from several months to several years in rare cases.

I hope this helps , i do have so much more research but i will spare you the deals for now.

My symptoms are interesting in that it is worse in the morning with the fatigue energy level of 3/10 and continues to about 2-3 pm, and then starting at around 4-5pm the fatigue begins to get better with the naps and rest i have to do during lunch time.

I am thinking of taking more time off from work to let the body try to heal itself.

Mono is very difficult to diagnosis because it is ubiquitous and blood testes are equivocal because by adulthood most of us will have antibody titer to mono, so the lab test are useless.

Are you fatigue most of the day or only inthe morning? and when do you feel the dizziness or what i call dysequilibrium or unsteadiness?

We should help each other to find more answers!!!

What tests have you had?

take care for now.

dizzy bradley

try:

http://www.pubmedcentral.nih.gov/articlerender.fcgi? artid=1307268

good night

Bradley

Post edited by: dizzybradley, at: 08/18/2008 23:11

I am very glad to have found this discussion since the last month has been such a rollercoaster. On Aug 8th I became severely ill vom, dia, etc and went to the er. I am a firefighter/emt so it takes a lot to get me to the er. looking back I do recall a ringing in my ear at diff times for the month before and a period of a week where i experienced a very scratchy throat and excess saliva at night. For the next two weeks i expereinced this "vertigo" like sensation, not quite spinning but just the knowledge that your equilibrium was just not quite right. I also felt as though my brain was slow or foggy, especially for the first several hours in the morning. At night, only when I would lay down, my heart would pound very hard, but also at a slow rate. Then came the headaches and more nausea, and severe fatigue. I also would wake up at night with shooting tingly pains thru my body. In addition to the dizzyness my vision has felt a little bit blury like my eyes go in and out of focus a little bit. Finally after 4 trips to the ER and trying to get the doctors to understand that something was really really really wrong, a heads up nurse did a monospot which came back positive. Now for the last week The severe fatigue has set in and general body aches and headaches, my vision and balance still doesn't feel quite right. My concern is just wondering if this could be something worse since I read about the false positives on the monospot test. I had an HIV/HEPC exposure to an infected patient when I tryed to stop some severe bleeding from an artery and got his blood on a cut on my arm. Thankfully that was june 20 and so far I have tested neg for HIV within the last week even though I have to retest. At the same time I have found a lump in the back of my throat which the doc thinks is a pronounced vertebral body, nevertheless he wanted a ct which I wait for the results on monday or tuesday, when it rains it pours. But I trust God that all is well and that the mono really is what is going on. Its just nice, in a sympathetic way, to see that others are dizzy and tired. Thanks, Paul