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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 

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  • Samsick
    Samsick christy32934

    Posted

    Hey Everyone,

    Thanks for all the kind responses to my messages.

    It is really interesting to hear how everyone else is doing. I agree with Mono's comment about the virus having morphed and become more stronger as years / decades have passed. This happens with bacterial infections that become resistant to antibiotics and end up becoming superbugs that can be difficult to treat. I do believe that a virus can become stronger and stronger the more it learns about its host and how to combat the immune system trying to suppress it throughout many decades! This could of course be a load of nonsense but interesting theory all the same?

    I really hope that things improve for me. Caroline, you are so right about the diary which is a great idea. It really is so difficult to actually notice any improvement as progress is so slow. Its a bit like looking back at an old photo of yourself and thinking 'oh my I have changed since then' yet when you wake up everyday and look in the mirror you feel as though you look exactly the same.

    We are all making progress in some way! But we just don't see it as it is so very gradual eek

    There is hope for everyone and when I recover I am going to try and be like Craig and offer hope and reassurance to others who are suffering.

    Sam

     

  • christy32934
    christy32934

    Posted

    HI Lisa, yes I actually watched the Unrest documentary like two weeks ago. I liked it. Made me sad and fearful I hope I don’t turn up like that but it was very insightful and made me feel happy that I’m not completely bed ridden although sometimes I can be a little dramatic when talking to my parents haha ( but aren’t we all ) thank you for all the tips and distractions , could always use a boost when feeling down both physically and emotionally 😇

  • christy32934
    christy32934

    Posted

    Not sure if this is normal in mono but it’s a good point that Lisa brought up. Does anyone have sensitivity to light ? Because I do. When I’m home from school I just want the lights in my room completely off and I don’t want to be bothered. I can still listen to music to relax and stuff so I guess noise sensitivity isn’t here but light definitely is. Anyone else ? 
  • denise37907
    denise37907 christy32934

    Posted

    Hi, I am in my late 30s and about 3 and a half months into battling mono. The roller coaster of ups and downs is diffucult to manage. I was doing a lot better for a couple of weeks, able to interect with my 3 young kids, but always took a 2-3 hour rest in the middle of the day. But the last 4 days have been difficult, so much fatigue and temps in the 99s that make me feel fevered and sick. I just don't know how to plan ahead anymore. I am a stay at home mom and every week I have to string together multiple people to help me with my kids. I find myself analyzing every little action, wondering if I am doing too much to cause my down periods. My family needs me and to not know how much longer this will go on is frightening and stressful.

    • Mono_too
      Mono_too denise37907

      Posted

      Hi Denise,

      I understand your frustration, I take care of an elderly parent in addition to my job. Luckily i can work from home.  You will feel better it just takes a very long time. As far as doing things, I think normal routine is ok, just don't overdo it. There is no real way to tell when you will have a down day, just rest and know that you will recover, this forum is a lifesaver.

    • denise37907
      denise37907 Mono_too

      Posted

      Thank you! This has been such a trying time. The first few months I kept thinking I would just get over it one week and be done with it, like a cold or flu. Now in the last month I understand I am going to be in this for a while. We are considering getting a nanny because it has been so hard for me to piece together care for my kids each week. Almost four months in, it is so hard to not to know when I will get my life back.
    • 40with.gf.
      40with.gf. denise37907

      Posted

      Hi Denise,

      i can sympathise so much with you, definately a trying time! I'm not sure what I would have done without help from my mum. I have 3 children so it's hard. I feel I like I'm getting better , still a while to go but getting there. 12 months already.

      x

  • lisa29739
    lisa29739 christy32934

    Posted

    Hey guys!  Just checking in.  

    After a really good New Year's weekend, I started having bad limb pain and fatigue at night.  It got worse every evening when I slept.  4 days ago I decided to go on a Keto diet and cut sugar out completely.  Yesterday I was so sick I thought I was relapsing again.  I realized I hadn't refilled my adrenal support tincture from my naturopath and hadn't taken it in a week.  So I thought maybe it was connected.

    Yesterday I refilled it and today I already feel better.  I looked up the ingredients and the main one is called Withania which is also known as Ashwagandha!  I had no idea I had been taking that for a month!  Everything I have read has recommended taking that herb to treat Mono, EBV and Chronic Fatigue.  If you are desperate to try anything I would start there.  

    Anyways- I hope you all are hanging in there.  And if you have any netflix recommendations please share! 

    • 40with.gf.
      40with.gf. lisa29739

      Posted

      Hi Lisa, 

      ooooo, I think I might try withania, might as well give it a go.... I'll pop out and get some tomorrow. I have also cut our sugar and cut down on bread/pasta.... If it doesn't alter my health it'll be better for my waistline anyway!

      are you just taking that as a supplement?!

    • lisa29739
      lisa29739 40with.gf.

      Posted

      Yep that's how I feel about this Keto thing!  Plus I love cheese and bacon and veggies and dip.  It's really all my favorite foods anyways smile

      Yes I take it as a tincture that my naturopath makes.  It has something called Avena Glycerite too.  My adrenals have been so out of whack.  And every time I get stressed the Mono rears it's ugly head.  

      I just put two droppers in water and drink in the morning.  Sometimes at night too.  My mom just read that it affects thyroid (can boost for people with hypothyroid) and might interfere with my synthroid.  So I'm checking on that but I think it's helping so I'm going to try and stay on it.  I'd just get the highest quality you can find.  At a naturopath if you can.  

    • 40with.gf.
      40with.gf. lisa29739

      Posted

      Cheese and bacon, I hear you on that!!

      Ahhh, thanks for the recommendations. It is worth a try, to help my body get better.im sure it can't do harm.

      yes, good to cut out the sugar,  already 5lbs lost so it is working, I've put on over a stone with this illness from lack of exercise!

      x

    • lisa29739
      lisa29739 40with.gf.

      Posted

      I so hear you!  At first I lost so much weight- it was scary.  Like pre pregnancy high school weight.  Normally I would love that but because it was from being sick it was scary and I hated it.  I'm up about 3-4 pounds above where I'd like and yep it's because of lack of exercise.  My muscles are dying to work out.  It's so hard not to do squats or lunges.  

      Let me know if the ashwagandha works!  On my tincture it's labeled as Withania. I really hope it helps you!  I think with cutting out sugar and adding this herb we are going to kick mono's butt.  And be way healthier than before.  Which I guess is the silver liningsmile

    • 40with.gf.
      40with.gf. lisa29739

      Posted

      I never lost weight in the beginning!! I'm probably in the minority there. That's why it was about 16lbs that I put on!!  Shocking!😱 

      Yes, better days are ahead. I have lots of good days, I'm just not back to normal me yet. And I'm not going to rush it either.

      keep calm and carry on! 😊

  • christy32934
    christy32934

    Posted

    Hello everyone , I hope you all had a great week. Does anybody go through bouts like this ?  Where you feel so hungry and you eat everything but then there’s also times where my appetite is completely gone and if I try to eat I usually just end up moving the food around my mouth and not swallowing. So weird I thought my appetite was improving but today all I have energy to do is lay in bed all day and eat oatmeal that I’m struggling to finish 
    • craig07920
      craig07920 christy32934

      Posted

      Hi Christy,

      Yip I definitely had the kind of thing going on when I experienced mono, during recovery there would be phases when the energy levels would feel not too bad and you would think you're starting to feel human again then all of a sudden it feels like it's come crashing down and everything goes - this zig-zag way is most definitely normal and just be reassured in the days and periods where the energy levels are gone that you're in no way back to the start - it's very normal and it will come back again much sooner - it's just all part of the way the body seems to recover from this.

      Same with appetite issues, I've seen lots of folk have these kind of issues too and with your body feeling so battered and beaten up it's no wonder it has that effect - so don't worry too much just make sure you get vitamins and herbs if not able to eat as much and remember you're going to get better completely this year!!

      Craig

    • Mono_too
      Mono_too christy32934

      Posted

      Hi Christy,

      Yes to all of the above, Every once in awhile I still get those days.

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