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Mono need help

Posted , 34 users are following.

christy32934
christy32934

Hi so In June I woke up one morning feeling very weak. I thought I needed to eat something but when I ate breakfast I still felt weird. I ended up having my first panic attack. My entire summer was filled with ER visits for weakness, low energy, fatigue, dizziness, off balance feeling, and generally feeling unwell. It turns out I have mono (diagnosed a week ago). I don't know what to do. Just looking for others' stories and well and recovery process. It's my 3rd month and I just feel so helpless. ?? Thanks guys ! Blessing to all 

2 likes, 733 replies

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  • christy32934
    christy32934

    Posted

    Hey guys, speaking of Chase questions with the recurring symptoms. Is it weird that I never had the initial "typical " symptoms? I never had swollen lymph  nodes , or the flu like symptoms. It was just one day I woke up with the weirdest feeling ever (bone crushing fatigue) 

    • Mono_too
      Mono_too christy32934

      Posted

      Hi Christy,

      ​I think this is pretty normal, I had a mild sore throat in the beginning and some ear issues, but it was the weakness and exhaustion that brought me to the doctor.

  • christy32934
    christy32934

    Posted

    Hey Guys I hope everyone's day is going well. I have a question. Did anybody here get diagnosed with vitamin deficiencies ? Before I got my mono diagnosed, my old doctor said my symptoms could be coming from a vitamin deficiency because my levels were a little low. I now have a new doctor which is the doctor that diagnosed me with mono. Therefore he doesn't say my vitamin d is low at all. Do you guys think i should get let the mono run it's course and listen to my new doctor ? or should i go off my old doctors decisions and supplement with vitamin d. By the way, I did supplement with vitamin D before. It's didn't agree with me too well so i stopped and never went back. But i don't want me NOT taking the vitamin d to hinder my recovery. 

     

    • 40with.gf.
      40with.gf. christy32934

      Posted

      Hi Christy, my day is over! Lol. Bedtime!!

      no, I wasn't aware of any deficiencies, the only thing that came up low was cortisol for me. I just take a multi vitamin and pro biotic. I try and have balanced meals and fruit .  Maybe go with your new doctor's advice!?!

      xx

    • rhonda21886
      rhonda21886 christy32934

      Posted

      Hi Christy, if Vitamin D doesn't agree with you but you are concerned about it being low get outside in the sunshine for 15 minutes a day. Eggs are also a source of D I believe.

      Prayers Rhonda

    • christy32934
      christy32934 40with.gf.

      Posted

      Oh how i would love to live in the UK lol haha. Yea I'm sticking with the new doctor. The vitamin D i was taking was complete crap ! thankssss

    • christy32934
      christy32934 rhonda21886

      Posted

      Hi Rhonda, yea I don't think vitamin d pills are the best for me. Looks like walks and eggs it is !! thanks smile 

    • 40with.gf.
      40with.gf. christy32934

      Posted

      Ahhh, you'll have to make a promise to yourself to say that when you're better, one day you'll visit our little island!!  

      I think I may even make a concerted effort to eat more eggs, natural vit D.

      ??

    • christy32934
      christy32934 40with.gf.

      Posted

      I'm not sure if Paris is in the UK exactly but if i didn't get sick i would be in paris sad. This is my last year of school before i go to college and my school is taking a trip to Paris to celebrate. Too bad mono happened ughhh! It's okay i'll be out there one day :D

    • 40with.gf.
      40with.gf. christy32934

      Posted

      Ahhhh Christy,

      paris is is the capital of France, so no, it's not in the uk. I doubt you're not missing much on the trip to Paris! That's the way you'll have to look at it! And you are so young, you have many many years to visit places in the future!!!  Just not meant to be this time xxx

      😕

  • chase4147
    chase4147 christy32934

    Posted

    Hey all, im on my 4th months with mono symptoms and its near impossible to imagine feeling normal, i really lose hope sometimes. I just want to feel normal like everyone else, and being sick for this long is the worst thing i have ever been through by far. I was wondering if any of you recovered people were ever scared of chronic active epstein barr or chronic fatigue syndrome, becasuse i am really scared i might have one of these. Its like I dont care how long it takes me to recover from mono, as long as I dont have one of those chronic illnesses. I really hope i feel better soon, my main symptom is drowsiness and this dazed feeling. My doctor said he would be shocked if i wasnt better in 2 months, but i am still very scared i will feel like this forever. Let me know if you went through this fear too! 
    • christy32934
      christy32934 chase4147

      Posted

      Hi chase, I'm going to tell you something and I hope it can help you feel better. Last week I was in the hospital for 3 days because i was so incredibly weak from this virus. but today i was able to walk around my block 3 times. I'm saying this because if i would of judged my life from a couple of days ago i would of thought i'd be bed written forever. But everyday is different and we can't give up. I would love to be the normal 17 year old girl in high school doing cheerleading or something but for some reason God didn't allow it to be that way. Please Chase remember all will be well. Message me anytime you need to talk. I also have those fears and it made me an insomniac. I would research all day everyday. The next thing i'd know it it'd be 6am the next morning and i never went to sleep. Don't let fears get the best of you like it did me. You can and you will beat this.

    • chase4147
      chase4147 christy32934

      Posted

      Im so glad to hear youre able to walk around the block! That improvement is amazing. Im curious, what did the doctors at the hospital say about your fatigue? Did they tell you its still from mono? Honestly i think deep down everything happens for some kind of reason, so maybe i wasnt supposed to party this semester, maybe you werent supposed to be in school, who knows why. But it would only make sense for us to get better i guess, weve been sick for too long...
    • 40with.gf.
      40with.gf. chase4147

      Posted

      Hi chase,

      most definitely!  I've had gf/mono for 11 months now and it has also been the worst year of my life!! I'm having much better days now. Bad days aren't as long and aren't as bad, it's really hard to see that you're getting better as its so slow, can't really see it day by day, but when I look back over my 11 months I can see the progress!! I am sure everyone on this forum will have had all those same fears and worries that you have about longer term illnesses. It's dreadful to go through.

      my doctor originally said to me 6 months to a year, so I believe that to be better by 6 months isn't long at all, don't put pressure on yourself to be better by then or be hard on yourself if your not. We are all different however so who knows BUT it does get better. Do what you can but rest, take it easy. Don't push yourself. You will get better, I am. It's so hard to see when you're in it and feeling so bad but  you will.

      it something we just have to ride out.

      caroline x

    • christy32934
      christy32934 chase4147

      Posted

      I honestly believed it was more than mono doing this to me but in all 3 days the doctors couldn't find ANYTHING. Even my cortisol levels were tested and they were normal (so no adrenal fatigue). I agree we've been sick for too long. We should be partying lol. Somedays it's hard, harder than hard. but you'll get through it. As Craig would say " I don't doubt your recovery" 

    • rhonda21886
      rhonda21886 chase4147

      Posted

      Chase, it has beenbeen 14 months for

      Me. This has by farfar been the most debilitating thing I've ever endured. Physically and emotionally!

      Just as Caroline said we have all had the same or similar fears. Progress is slow but it is happening! I am so much more grateful for my ability to function more normally.

      You too will get well.

      Prayers Rhonda

    • Mono_too
      Mono_too chase4147

      Posted

      Hi Chase,

      ​Yes, I was convinced I would never get better, It was 6.5 months before I even began to have good days and a full year to feel somewhat normal, It is very natural as you have never come across a virus that can wipe you at the way this one does. I remember reading a poll and over 50 percent of the people who responded said it took six months or more to feel better.

    • christy32934
      christy32934 Mono_too

      Posted

      Exactly ! Also Chase if it helps when i was in the hospital one of my doctors told me that most people that claim they have cfs really just have ebv virus. That's why their cfs just gets better over time. So either way you can recover.

    • gee29819
      gee29819 chase4147

      Posted

      How do you feel after physical or mental activities? If 24 hours later you feel worse , you might have a cfs.

      Patients with chronic ebv have persistenrly elevated liver enzymes and lowered wbc ebv and platelets.

      So just do a blood test: CBC ALT AST GGTP if you want to find outhe. 

    • chase4147
      chase4147 gee29819

      Posted

      Hey Gee, to be honest I feel the same as usual with mono after physical activity, I walk several miles a day and run a couple times a month as well, with no extreme fatigue following activity, so I doubt I have CFS, also I have had 2 blood panels done since I got mono and all my organs including my liver were fine. The part of the test which got my diagnosis for mono was first test IGM acute and IGG antibodies were high, and in the second test the IGM went down and the IGG ones are slowly going down as well. 
    • craig07920
      craig07920 chase4147

      Posted

      Hi Chase,

      I really do understand that fear of worrying about the chronic EBV and things like that. I went through the same worries when going through the virus, it was awful, but I do want to reassure you that this kind of thing I believe is very rare and the experience you are going through now is normal for this virus. I don't mean to say that to trivialise it, because it's awful what you are going through, but I want it to encourage you that you will still get better.

      The 4 month stage was a bad one for me because I felt totally beaten up by the virus, it had been such a long time and I felt weary but still a long way from being well. It sounds like you are feeling the same way, want to reassure you that things do get better from here - and that you will make a full and complete recovery, without any doubt in my mind. Don't panic if it still takes a bit of time, that can happen but you will get better - truly and honestly I went through the same and your body resilience comes back to you. Hang in there - God will heal.

      Craig

    • gee29819
      gee29819 chase4147

      Posted

      It shall pass then.

      Good thing you tested iggs

       and igm. I did too but 4 months later so no igm was detected.

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