post-mono fatigue

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Mandy11
New Member


Date Joined Mar 2005
Total Posts : 2
   Posted 3/31/2005 4:58 PM (GMT -6)   
Hello all,

Forgive me as I have just breezed through the main topics and hope this topic is not already extensively covered. Has anyone here experienced chronic fatigue because of/ after having mono? I have been diagnosed with post-infectious chronic fatigue. Some web info claims that this is separate from and not to be confused with cfs, and some web info seems to lump it all together. The fatigue hit me a month after my mono recovery, and has been with me a couple of months now, which is nothing compared to some of the stories I have read here. So I humbly ask, has anyone gone through a similar situation?

snohare
Veteran Member


Date Joined Oct 2004
Total Posts : 2086
   Posted 4/1/2005 7:11 PM (GMT -6)   

I personally have not Mandy, but I have met a number of people over the years who have suffered chronic fatigue as a result of mono. The most recent one is a close friend of mine who recently burned the candle at both ends a bit too much - very much a non-stop go person - and brought on a relapse of her long-distant, mono-related fatigue. It took her several months to get over it; I can't remember how long she was signed off work for but it was weeks if not getting on for months. However she is now back at work, and has just come back from month's holiday in New Zealand, canoeing, walking and hang-gliding.

So I think that's pretty much "cured" there... tongue yeah

The tales I have heard previously from other mono sufferers typically talk of a period of severe fatigue after the initial illness, which extends for a period of three months to a year or more (dependent on severity of illness, attempts to ignore it, original health etc) and during which there is a marked decrease in immune system functioning, leading to an increase in opportunistic infections. However given the appropriate treatment - which I think is supposed to be a specific type of antibiotic followed by complete rest for a number of weeks, (  nono   but don't quote me on that, my info is old and those details may be wrong )  a pretty much complete recovery can be expected. You didn't say why you were asking, but I'd guess that's what you were wondering about.  tongue

The reason for the confusing information you have found on the Web is due to the debate about what causes chronic fatigue. It is a notoriously grey area as all sorts of ailments - darn near all of them really ! - can cause fatigue, and there are as yet no cut-and-dried tests or biochemical markers that can be used to say what is and is not "chronic fatigue". There does seem to be split between some types of fatigue which are post-viral (like mine) or post-some-kind-of-illness, and others which seem not to be; but you can also split cases up into also-have-opportunistic-infections, and don't-have-opportunistic-infections. And to add more spice, in cases like that of Myalgic Encephalopathy (M.E.) there is also a wide range of well-defined neurological symptoms, which are however not well used as diagnostic criteria. And in America everything tends to get lumped under the umbrella term "Chronic Fatigue Immune Deficiency Syndrome, while in Europe and the UK the debate rages about Post-Viral Fatigue Syndrome and whether M.E. is caused by one trigger or many, etc etc.

eyes  Clear as mud. If Chronic Fatigue was a church, there would be about a dozen different pastors, each with their own congregation. And of course it's a medical Catch-22; you can't research an illness that is not properly diagnosed, but how do you diagnose this illness without more research ?

Happily, mono is unique, in that there is a diagnostic test which confirms that you have mononucleosis, and a very specific treatment regime for that trigger. So you have a "get-out-of jail-free" card on that, which most chronic fatigue sufferers do not. 

The main thing to remember is that if you do overdo things mono is inclined to come back - though not so badly - and the best treatment is rest in the sort of quantities that would drive a contemplative monk bananas.  yeah  

Hope this helps.  


Mandy11
New Member


Date Joined Mar 2005
Total Posts : 2
   Posted 4/2/2005 12:42 PM (GMT -6)   
Hi Snohare,

Thanks for your reply, that actually helps clear up my confusion alot. I seem to need to keep in mind that although chronic fatigue symptoms are similar for people, the reasons they suffer from it are all very different. I can't tell you how great it is to hear you speak of another chronic fatique/ mono sufferer who has returned to an active life...especially since I am a pilates teacher!! I appreciate your reply.

RainDance
Regular Member


Date Joined Mar 2005
Total Posts : 253
   Posted 4/3/2005 3:09 AM (GMT -6)   

Hi Mandy and welcome..

I had Mono in my mid 30's, it went to my liver, almost killed me and I was in the hospital a while.  :(

Took me about a year to get over it and the doctor said that was normal.  Was an effort to do the dishes.

Just be patient and when you get tired, be sure to rest.

Good luck and don't push it...


RainDance
 
Don't forget.. Drink your water.. :)


Brynn
Veteran Member


Date Joined Mar 2003
Total Posts : 1663
   Posted 4/8/2005 8:30 AM (GMT -6)   
Hi Mandy,
Welcome to HealingWell and the CFS forum!
I'm sorry it's taken me so long to reply.  Snohare has posted excellent info, as always.  I've also heard about a period of fatigue following mono, which is both frustrating and frightening.  But I've never heard of it not passing, although I have heard of up to a couple of years before it does pass.  But that's probably an extreme.  Try to pace yourself, be sure to be kind to yourself and be patient with your body.  You will be well again.
 
Mono and CFS are separate and distinct illnesses, and one does not lead to the other.  I have heard of people having both, but I think it's rare.  One problem you might be having with confusing info on the internet, is that there is a difference between the illness known as Chronic Fatigue Syndrome (CFS) or Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS), and the symptom known as "chronic fatigue".  Chronic fatigue the symptom, is a symptom of a lot of different illnesses, including and especially mono.  But Chronic Fatigue Syndrome is a collection of many symptoms, also including the symptom of "chronic fatigue".
 
Unfortunately, many unscrupulous websites take advantage of this confusion in order to sell products.  So don't be fooled into buying unnecessary products.  Just take good care of yourself, including nutritious diet, plenty of rest (your body does need to heal), and keep stress to a minimum.  You will be well again!!
 
All best.
Brynn
 
* Co-Moderator for Chronic Pain forums
* Moderator for Chronic Fatigue forums


Smileyx
New Member


Date Joined May 2005
Total Posts : 3
   Posted 5/13/2005 3:34 PM (GMT -6)   
Mandy, i am just where you are now! it's crap but they do say that some tlc and rest... and obv all the healthy stuff you can...

Tayshel
New Member


Date Joined Sep 2010
Total Posts : 15
   Posted 11/10/2010 1:30 AM (GMT -6)   
I have been diagnosed with post infectous mono chronic fatigue.mono was detected in my blood in nov09.its still in my blood today.i dont know what to do.the fatigue is ruining my life.ive been sick for a year.Will this ever go away?im assuming my

Tayshel
New Member


Date Joined Sep 2010
Total Posts : 15
   Posted 11/10/2010 1:32 AM (GMT -6)   
Immune system isnt working poorly.my next attempt is to try and get off my medications such as xanax bcus i hear that can harm the liver.which could be slowin the process.maybe well never be welll again.i have no idea.i dont knw what to do&im scared this

Tayshel
New Member


Date Joined Sep 2010
Total Posts : 15
   Posted 11/10/2010 1:34 AM (GMT -6)   
will never end! Bcus i dont seem to be getting better.my doctor predicts i have 2 to 3 more years of this before i get better! I dont kno how much longer i can stand it!what are some ways we can boost our immune systems? By avoiding certain medicatons?

Tayshel
New Member


Date Joined Sep 2010
Total Posts : 15
   Posted 11/10/2010 1:36 AM (GMT -6)   
becuase i dont know what to do? Im broke i have no money to get any vitamins,ect.&im exhausted to where i feel like im goin to faint at all times.i cant get out of bed.its only gotten worse for me.they say things gota get worse to get better.but after a

Tayshel
New Member


Date Joined Sep 2010
Total Posts : 15
   Posted 11/10/2010 1:37 AM (GMT -6)   
Year of havin mono and waking up feeling the same if not worse everyday is seeming a little strange that one day im just going to be normal again!

Buddysmum
New Member


Date Joined Nov 2011
Total Posts : 1
   Posted 11/16/2011 5:44 PM (GMT -6)   
I was diagnosed with Glandular Fever (EBV, mono) nearly 5 years ago. Up until 6 months ago I was still testing positive, but the latest blood tests confirm that it's no longer in my system. Yet I still suffer from CFS - I have good periods when I can start exercising, then the fatigue comes back and leaves me unable to function. Will I ever recover? Any positive comments would be most welcome!

MoonandStars09
New Member


Date Joined Dec 2011
Total Posts : 1
   Posted 12/14/2011 3:43 PM (GMT -6)   
I contracted mono (EBV, Glandular Fever) in April 2010......was off work for 6 weeks and still didn't feel very well when I returned to work. My doctor said I had a very severe case of it....part of it was that I was 50 when I caught it. I've tried to keep up my gym visits (3 times a week) along with regular walking.....but its been quite difficult. Also seem to catch a lot more illnesses, viruses, colds since I've had mono. Definitely an up and down recovery time from this illness.....can be rather depressing at times. Have also found that coworkers and others don't "get it" when I try to explain it to them....frustrating because the exhaustion can be overwhelming.

daph_412
New Member


Date Joined Jan 2012
Total Posts : 1
   Posted 1/13/2012 6:33 PM (GMT -6)   
I first got sick just before Christmas of 2010. I think I picked it up from work as everyone was sick around this time (at a drive-thru coffee shop wearing headsets which people shared). I had the same symptoms as other people, temperatures, cold, heavy head etc. It didn't seem to be gone after a few weeks so I went to the doctors 3 times and had a number of blood tests where it showed I had a serious case of glandular fever. I had really large tonsils and was struggling to breathe normally, I was dizzy and felt like I would faint many times, my eyes would blur and I wouldn't be able to focus, headaches, vertigo, and fatigue. I was still working relatively long hours at this point at the coffee shop as I had only been there 1-2 months; around 6-8 hours with sometimes early starts (5am). I would feel a lot worse when I had to wake myself up really early, I would feel nauseous and the symptoms would escalate. Many times I would have to go home early or call in sick because I thought I would just collapse or faint. I couldn't take time of work to rest though because I needed money to pay off my uni fees as I couldn't loan them at the time (for not being a citizen of the country, only permanent resident). After 2 months or so it seemed to go away and I felt a lot better, about a week before I started uni. Since then I would get the occasional colds and flu which would seem to stick around in my system for a lot longer than what I used to get. This was normal considering my immune system was really weak and I needed to build it back up again. I started swimming to try build up my immune system again but soon stopped when uni became full on.

Recently I started feeling a lot worse again, particularly the last 2 months. Really intense fatigue, dizzyness, blurry eyes, spacing out, unrefreshing sleep (I get 8-9 hours a night and still feel exhausted), heavy head, and a buildup in my sinuses. I'm constantly sick with colds and flu because my immune system has hit rock bottom. I was diagnosed with post fatigue syndrome almost a week ago and was given sleeping tablets to try and get into a deeper sleep every now and then, and B12 injections which I've been told to have once a week. I have not yet had an injection but have tried the sleeping tablets and actually made me feel worse as I had to work a 9 hour shift the next day.

I'm unsure how long I've actually had PFS for as I've felt rather under the weather for a long time now but it was never as bad as it has been these 2 months. I work 2 jobs and been working about 5 days a week the past few weeks and it is exhausting me. I just don't want to take time off because once I do I'm afraid I won't be able to go back for months or won't be able to keep my jobs. Especially now its coming up to my 3rd year of uni, I want to do well and I want to get work experience and I want to exercise and get fit but I just can't be bothered. This fatigue really takes over your life. But I know it will get better over time :)

NRVLaura
New Member


Date Joined Jan 2012
Total Posts : 17
   Posted 1/15/2012 4:39 PM (GMT -6)   
Hi, I am new here, but thought I would mention my experience. I developed mono in 8th grade (am now almost 39). Since then, the virus causing mono (Epstein Barr Virus, EBV) has recurred frequently. Symptoms of recurrence include sore and swollen glands in my throat and armpits, low grade fever, crushing fatigue, mental "fog", and joint aches. My spleen also becomes swollen. Recurrence has been verified through EBV titre panels showing chronic, active infection. However, the amount of EBV in my blood stream waxes and wanes. Sometimes, it is gone almost a year. Sometimes it is active for months to years.

To cope with this, I have found the following helpful. I take L-Lyseine when it is flared. EBV is in the herpes family of viruses and so needs guanine to make a viral coat. Lyseine binds guanine. For me, 2 tablets of lyseine 3 times a day helps shorten the length of infection and the intensity of symptoms. I take a high-strength B-complex supplement from the health food store. This helps increase my energy. And, I take health food store bought lecithin to promote cellular generation and repair. To increase my immune system's functionality, I limit sugar and refined carbohydrates (and avoid wheat products). I swim 3 times a week, even if it is just sitting in the heated pool at the aquatic center and wiggling my legs, it is at least a little exercise. I meditate 15 minutes per day and monitor stress.

These things, over the course of the 2 decades I have been dealing with this, have helped. However, I still have flares, and sometimes can hardly move for a month or two. It becomes like wading through mud that is knee deep... effortful to even breathe. But, the flares are less than they were, and they DO go away.

I also have comorbid diagnoses of fibromyalgia, osteoarthritis, chronic migraines, allergy & asthma, and depression. I take prozac daily, and verapamil to stabilize my blood pressure. However, having been on multiple medications that did not seem to help, under a doctor's supervision, I stopped taking them all. Now, I take the prozac and verapamil, and add supplements when needed. The meditation and gentle exercise help more than oxycontin and handfuls of other medications ever did. It is important, to note, however, I that I did these things under medical supervision, and that while these work for me, they may not be ideal for others.

Hope it helps.
Laura

renee29
New Member


Date Joined Apr 2013
Total Posts : 1
   Posted 4/1/2013 7:35 PM (GMT -6)   
Is there anyone who has had any success with mononucleosis and fatigue if so please please post on what you did for relief😢😢
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