My Health Continues To Fail: Now I Have Mono – Again

As I had posted the other week, I had a bad two week flare of CFS.  I went back to work and I was starting to feel better.  And then I woke up last Sunday and I wasn’t feeling well.  I had started doing my housework on Saturday and I have been trying to split the housework up into two days so that I wouldn’t wear myself out.  With just coming out of a flare I have been very cautious in what I’ve been doing.  So Sunday I had finished cleaning my living room and I started working on my son’s room and all of a sudden I couldn’t move very well and I started feeling really sick.  I sat down on my son’s bed for a while and got a hold of myself and then finished his room.  After that I was bedridden the rest of the day.   I am only working Mondays now so the next day I got up for work and I was feeling worse than I felt on Sunday.  I was afraid to call off work, however, since I had just been off previously for two weeks.  I told my husband it’s just one day, it’s just five hours I would push through it somehow.  

I looked absolutely horrible, my eyes were so swollen, that no amount of makeup helped and I really had to push myself through the shift.  Needless to say, I came home Monday and have been in bed ever since with the exception of my doctor’s visit on Wednesday.  I had called the doctor’s office on Tuesday because I knew what I was feeling wasn’t the normal CFS feeling.  I have a sore throat, my lymph nodes in my neck, left armpit and groin are very sore, I have a headache so severe that Oxycontin isn’t even touching the pain, and I can tell that my body is fighting something. 

The doctor is pretty positive that I have mononucleosis even though I have had it before because all of the symptoms fit, including the swollen spleen.  The other problem I am having that I always have when I get sick with any type of virus is that my bladder will act up so on top of being extremely exhausted, I have to keep running to the bathroom every few minutes to urinate.  I am so miserable, it is unreal.  We’re waiting to get the blood test results back but she said she would be surprised if it didn’t show mono.  Here’s the thing with mono, though.  Once you have mono, your body is suppposed to build up an immunity to it but apparently mine hasn’t.

I just don’t know what to do anymore.  I feel like I keep falling further and further down a well and there’s no way back to the top.

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  1. I obviously don’t know if you have mono or not, but I had all the symptoms you have and I ended being negative for mono. I ended up being diagnosed with CFIDS. The swollen and painful lymph nodes are a common part of it. So is the really bad headaches, swollen eyes, neck pain, all of it.

    Every time I have a severe crash that is what happens.

    As I said, I don’t know if you have mono but if not, this looks like a severe flare-up.

    I suppose you could get mono on top of CFIDS but technically CFIDS is an exclusive diagnosis meaning everything is excluded first then the diagnosis of cfs.

    If I can be so bold to make a suggestion. I have had CFIDS for 20+ years. If you don’t take a break – a long one – and do everything you can to rest and pace, you won’t every have a chance to get well. One day a week may be too much for your body at this point. Cleaning house may be too much. You’re body is fighting a raging battle and needs every ounce of energy you can give it to win.

    There is no guarantee but you only chance at getting well is letting go and allowing whatever you body needs. That literally may mean staying on the couch or in bed for quite a while and then slowly, very slowly working back to some semblance.

    Hang in there. Your in my thoughts and prayers.

    • Hi Dominique, My mom thought the same thing – maybe it is the CFS. I’m not so sure because it doesn’t feel the same. Unless, of course, it is CFS taking a new course.

  2. Hey–I’m sorry that you’re feeling poorly.

    A heads up though, if you have severe headaches, Oxycontin doesn’t always help, in fact, it can make headaches more severe. Try taking something that reduces inflammation (for your capillaries) like Ibuprofen.

    Good luck.

  3. Melissa says:

    I stumbled across your website and your post while looking for information on CFS and Fibro as I was recently diagnosed. Currently I’m a patient at the FFC in Dallas. I’m still learning all about this disease and how it effects me, but like you I too just had a bout with Mono. What I was told is that mono hides out in your body and can be reactivated when your immune system gets too taxed. Have you read the book by Dr. Titlebaum from Fatigue to Fantastic? Perhaps you can use some of the info on your own. I hope you feel better soon. So far the treatment I’m getting at the Fibro and Fatigue Centers has really helped me – I’m just 4 mos into the program.

  4. Chronic, recurrent mono is one of the possible long-term side effects of a mono infection. I had a severe bout of Mono when I was 15, and have tested positive several times over the years for both virus’ associated with Mono: Epstein-Barr and Cytomegalovirus. So yes, you CAN get it again!

    Considering the close association that EBV has with CFS, it is not at all surprising that a recurrent form of mono would be part of the spectrum of symptoms.

    Good luck!

  5. Kristie Jones says:

    Hi Sandy!
    Like you, I too have a very long list of ailments. However, several years ago I began to get so tired that I would almost fall asleep driving down the road, my entire body hurt, felt a lot like the flu, but my throat would hurt so bad to the point that I could not swallow at times. I was almost certain on several occasions that it had to be strep throat, but everytime my test would come up negative. My PCP finally decided to do some wextensive bloodwork, and of course it came back positive for mono. In a lot of people who contract this, you have it for several weeks, and then it lies dormant in your body, never to flare again. However, some of the more “lucky” ones like myself have what they call chronic mono, which seems to flare every so often, but never completely goes away. The one thing that I have found that seems to make the symptoms go away within 24 hours is a does of Prednisone. I usually wait a day or to to see if the symptoms will ease on thier own, but there have been times when I have to take a pill, and sometimes overnight the swollen glands in my neck are almost gone, and I dont seem to hurt as bad. As with everything, different things work for different people, but it cant hurt to look it up online and ask your doctor about it. You might want to also google “Chronic Mono” and read some on this.

    Although most days I too ask myself how much can I bear, when will this get any easier, I just have to take it one hour at a time and try to move on as best as I can.

    Good luck!! ~Kristie J.

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