Mononucleosis/GF

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i was diagnosed with mono/GF 16 months ago. I was very ill for the first 4 months with sore throat, enlarged liver and fatigue. Now I am left with fatigue as my only symptom. My family doctor has sent me to an Infectious Disease Specialist at the university, a Neurologist and my Gynecologist to check out everything to make sure I do not have any other condition causing the daily exhaustion. All the test have come back normal--which I am thankful for. However, now I am still so fatigued that I cannot work or socialize much. I stay home and rest most of the time. If I am going to go to a family birthday party or to church, I plan my week so I get plenty of rest without doing household chores so I have enough energy to go out. On my good days I can do light house work like dusting, feed the chickens in my backyard and cook dinner. On my bad days I have head aches, nausea and am so exhausted that I spend the day in the recliner chair or in bed. 

Is there anyone else who has mono/GF symptoms for so long?  I am 62 years old and before this have always worked full time, been in a walking club and enjoyed volunteering. I have never been this ill in my life!

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22 Replies

  • Posted

    what caused the mono, any infections, food allergy , etc ? 

    REst and hydration is good until the mono virus is cleared. 

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  • Posted

    Hey Gerbear,

    Sorry to hear you are still having such a hard time with this. I know and believe recovery times are different for everyone, and I guess being a little older can mean it maybe takes a little longer than when younger.

    Just hoping and praying things will get better for you still Gerbear, I truly believe that they will with God's help and hold onto hope today. Thinking about you and just hoping for a more settled period for you. Remember message on the forum any time.

    Craig

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  • Posted

    Hi Gerbear, I've read where it may take 2 years for complete recovery. I have taken Craig's advice to rest before and after activities. I find that it helps. Please keep taking the best care of yourself that you can.

    I have started mild exercises and go for short walks everyday. Some days less than others.

    I'm praying for your recovery.

    Rhonda

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  • Posted

    Hi Gerbear,

    Have they given you an Epstein Barr virus panel? this gives you an idea if you are still active or going into the recovery phase. My mono/gf test is now negative, but high titers to Epstein Barr and just slightly into the active phase so I am either recovering or reactivting, hoping for recovery. I am 54 and it seems to last longer the older we are, I have had it six months.

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    • Posted

      Hi Rhonda / Mono,

      Yes I agree it definitely can take longer than others for some to recover. Even though I mostly recovered inside the first year, the second year you are still prone to tiredness and minor relapses for sure, and everyone's route to recovery is different - if you hear of someone recovering inside 4 months you're still struggling after 16 months, it's not easy for sure but it doesn't mean that you will not recover, I still believe you will and I believe that for Gerbear, Mono, Rhonda and everyone who comes across this message.

      Don't lose hope and praying and keeping faith in a full recovery for you today.

      Craig

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    • Posted

      Hi Rocky,

      I have had lymph node swelling, nausea, shakiness, general feeling of illness, weakness.

       I was tested for lupus ect. as it runs in our family, thankfully just Epstein Barr/Mono it has been a rough six months and just feeling better in the last two weeks.

      I have heard that it can be your bodys immune response that causes these long lasting symptoms and the high titers in my Epstein Barr test would point to this.

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    • Posted

      Not necessarily high titers, but sometimes there maybe other infections like CMV and parvovirus, that can cause massive immune reactions with long lasting symptoms like rash
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    • Posted

      Hi Rocky,

      I had and still have all of the symptoms you mentioned except for the rash.

      I'm toward the end of month 9 and am beginning to have more and more good hours each day with not so many hours that are not so good. I'm so thankful!

      This is and has been the most difficult illness I've had by far.

      God has been my source of refugee and strength.

      Doctors seem to know so little about it. The fact that it seems to play havoc on all or most of our body systems makes it most difficult to deal with and manage.

      The good news is you will get better.

      Praying for you.

      Rhonda

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    • Posted

      Hi Rocky,

      Joint, muscle and abdominal pain I still experience through out the day. It comes and goes. In the first several months it was pretty much constant.

      Lymph nodes have not gone completely down. Some days they appear more swollen and angry than others. Night sweats are mostly gone away.

      I'm so glad you ask the frequency of the occurring of these symptoms because I realize they are becoming less intense and frequent. As I feel up to doing more I notice them less. I also try to pace myself and rest through out the day.

      Realizing that recovery can not be rushed is very important. Each at their own pace. We learn as we go.

      Hopefully you will see improvement soon.

      Rhonda

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  • Posted

    Hi Gerbear! I'm so sorry you are still sick, how discouraged you must be. I do think that the older we get (I'm 56), it's possible it takes that much longer to fully heal. I was diagnosed with shingles January of 2016 and EBV and HHV -6 virus in February of 2016.  I'm still ill, but I was also diagnosed with an inflammatory, autoimmune illness, which can also cause severe fatigue. I'm not sure if it's the viruses or the autoimmune illness that is causing me to be so fatigued. 

    I really feel for you. To be an active person and then suddenly not is hard. I'm praying for you and do believe that you will get better. Like some of the others said, 2 years with this illness is not that unusual.

    Try to be patient with yourself. When the weather is nice, sit outside and take in the beautiful spring weather. Envision yourself healthy and happy. Eat healthy, whole foods...... Know that you are a worthy, wonderful person even though you are ill and not able to do everything you were able to do before you were ill - yet. Hugs for you.

     

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    • Posted

      Thank you for your encouragement. Yes, I agree that getting outside in the sunny spring weather does help. I have 6 chickens that give us 4 to 6 eggs per days. It is fun to go out each day to feed them and collect eggs. Someday I get to sit outside, even if I have a coat on, to enjoy the simple things in life!  Blessings to you and prayers for your continued healing!
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    • Posted

      Fatigue is initially from EBV/mono, but if you also get autoimmune disorder, then its a double dip on fatigue, even if you recover from the mono, which most people do when the immune system takes care of clearing it. 

      What symptoms does HHV-6 cause and how does it affect or infect you?

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    • Posted

      Thanks for the wise and positive words Andrea, yes I definitely think only those who are going through it really understand how debilitating it can be and the dramatic effect it has on you living a normal life.

      Gerbear, Rhonda, Andrea, Mono, and everyone on the site - thinking of you all and remember that you will make a full recovery and get over this, even if today seems like a low period or a dark day, the way you feel now physically and mentally is temporary and will pass over and new hope and strength and health is on its way. Sending hugs too and trusting that God will guide us all through our challenges this day.

      Craig

       

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    • Posted

      HHV-6 symptoms are very similar to EBV, though I think there is more chance damage. i beleive what happened was I had a couple of very stressful years (both my daughter and mother diagnosed with cancer) and had not been feeling great to begin with but I managed to work 40+ hours a week in a very stressful job.  I got shingles, which I think lowered my immune system and then both the EBV and HHV-6 reactivated.  My adrenals also weren't producing much cortisol, so that didn't help! I've not worked since February 2016 and on May 1st will be officially retired.......not my plan and I need to grieve the loss of my career. I do believe that there is something else out there more suited for me, once I feel better. Maybe even volunteering or exploring the arts.

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    • Posted

      Hi Andrea,

      So sorry to hear about the terrible time you have been through in your life, just want you know that yes there is still a good purpose out there for you, something for you to do, volunteering is a great thing to do and you get to meet lots of new people and it's much less stressful than a such a stressful job for sure. I'm having a few worries with a job situation at the moment too and it's not nice that's for sure.

      I'm just hoping and praying for healthier and happier times ahead for you, I believe that you will get better and that the difficult times can be put behind you and your family, just trusting God to help with that!

      Thinking about you and thanks for your supportive words, and remember there is still hope today and blessings are coming to you in abundance smile

      Take care

      Craig

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    • Posted

      EBV and HHV-6 are both herpes viruses, but HHV-6 is rare. 

      HHV-8 and EBV are the two herpes viruses that causes cancer, although its rare to catch cancer with these unless your immune system is faltering, like in hiv co-infection; or other causes of immune dysfunctions.

      Therefore, always have to be in good health and cheerful attitude avoiding stress at all times, to keep your immune health is good shape with such infections.  

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    • Posted

      I've changed my accound. I lost the password and requested a new one but it didn't work, nothing came back in days.

      I've just finished my 7th month. I had a few closer to normal days but now I'm hit again with shakiness, twitches etc and some upper-chest pain, right under the bone, some membrane got inflamed, I guess. I'm thinking about going to the hospital again, but I've tried it three times and hasn't really helped me, since they are always clueless. 

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