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Almost 9 months in

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Hopefully this will work this time. On the 7th it will be 9 months since my diagnosis. I have had mono longer by a few weeks but I use the day of diagnosis as my monoversary. This virus has ravaged my body. I have lost 23 pounds and now have what I hope aren't permanent symptoms. It is a rollercoaster. Some days I feel like my old self. This has been going on since about 5 months in. I would have a good few days and then relapse. Sometimes my relapses were only for 4 days and some up to two weeks. The anxiety this has causes has been debilitating but just like everything else with this, it is come and go. I take small doses of Klonapin when it is bad. I know when a relapse is coming.....I will have an elevated heart rate and severe digestive issues for a few hours to a day.....and then milder symptoms the next day and then I am in relapse. I recently had a severe cold that threw me in to another relapse. With this one the sleep disturbances and the internal vibrating has been my main symptoms. When you have this you really have to learn to live your life day to day. No making plans a few days out.....you just don't know how you are going to feel. The good part is I am finally regaining strength after being bedridden on and off for several months. I hold out hope that someday this will be behind me. Behind all of us. Mono teaches you self care. Slow down.....don't take the good days for granted. My GP isn't very knowledgeable about EBV and especially about recurrence. He didn't even know it was a herpes virus. I have been going to specialists based on my symptoms and none can find anything wrong with me. So I have to believe that this is all just still dealing with the EBV. I have a friend that has been dealing with this just shy of 3 years. She assures me that my symptoms are normal and that someday I will be more better than not. I have to believe that.

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6 Replies

  • jenna26081
    jenna26081 Guest

    Posted

    I have had similar issues. I've only had mono 2 months plus maybe a week. I couldnt handle the anxiety and other things like insomnia and nightmares and waking up hot and sweaty all night. I ended up calling a therapist and it turns out I was diagnosed with acute stress disorder (PTSD but shorter duration) from the stress of it taking so long to be diagnosed and knowing I was sick. I have health anxiety and that just ruined my mental state bc doctors kept saying they knew I was sick but didnt know what it was til one finally did a mono test. Besides being kind of tired I feel mostly over the mono but now I'm in therapy and dealing with this acute stress disorder the mono caused. I convinced myself I had cancer, I had such high levels of adrenaline and cortisol being released all day long that I was feeling physical symptoms that were really just from the high non stop anxiety. I started therapy a week ago and finally the nightmares and waking up every hour sweating and panicky has stopped now that I know what it was. I had 3 back to back illnesses from oct to starting mono on dec 1st1st and the therapist said that is part of the trauma, being so sick so long. Maybe look into a therapist to talk to, it sounds like you could be suffering similar emotional trauma from the illness!!

    • Guest
      Guest jenna26081

      Posted

      I am the same way. I have health anxiety. I too was convinced I had cancer but all my blood work came back fine. I ended up with high blood calcium from being bedridden for so long. I had to see an endocrinologist and then my surgeon for that. Both are convinced I am fine. I have seen a neurologist because of the internal vibrations. She says my brain function is fine. I think the EBV attacked my nervous system and that I am still healing from that. I was seeing a therapist and she was nice.....but she didn't deal well with anger just anxiety. And when she told me a story about her almost choking to death, that was it for me. I had the nightmares and sweating etc when I was in the worst part of this but that has stopped. I take meds to sleep but when I am relapsing I wake up several times a night and never feel rested. Just remember how lucky you are that you are already coming through this after just a few months. It took a few weeks for me to get diagnosed. And I thought "YAY its just mono and I will be better in no time" and it just got worse from there. My immune system is horrible now.....I really have to watch where I go and what I do because I caught the bad cold at the surgeons office from someone that was there and coughing. Hard to avoid everything when you have kids in school. I had PTSD from childhood trauma before this illness but now I am so mentally fragile. Working on that daily too 😃 Glad you are finding ways to heal!

    • jenna26081
      jenna26081 Guest

      Posted

      Wow that is intense. I guess we all have a lot of issues going on when we get deep down inside of it I am definitely lucky that my physical symptoms from the mono are pretty much ending at the 2 month mark I am definitely more tired than I am used to being which I will just have to get used to. I think the combination of having mono plus having 16 month old twins and having just moved was all just too much for me I think it was a combination of physical and mental stress and I got struck down when my defenses were low. Along with having mono I got hand foot m mouth disease the flu and strep throat too so my immune system was shot. I do think a lot of the physical symptoms I have still been kind of feeling are related to the trauma of the whole illness thing and my anxiety issues. I hope you start to feel better soon Maybe you could find a new therapist I really think that RB helps us work out all the stuff going on in our heads. I was lucky the one I found is a trauma specialist and I can tell by her demeanor she would never share a traumatizing story like that and make me feel worse that is not the sign of a good therapist I would keep hunting for a new 1 I do think a lot of the physical symptoms I have still been kind of feeling are related to the trauma of the whole illness thing and my anxiety issues. I hope you start to feel better soon Maybe you could find a new therapist I really think that RB helps us work out all the stuff going on in our heads. I was lucky the one I found is a trauma specialist and I can tell by her demeanor she would never share a traumatizing story like that and make me feel worse that is not the sign of a good therapist I would keep hunting for a new 1

    • Guest
      Guest jenna26081

      Posted

      OMG.....you did this with twins!!!! WOW! Hats off to you. I kept laying in bed thinking how happy I was that all my kids are at least independent and how I wouldn't know what to do if they weren't and I was that sick. I think most young people come out of this quicker. I am 52 and had been feeling off for months, then had a very stressful event and BAM....mono recurrence.

      That being said I am going to find an actual psychiatrist instead of a therapist. Thanks for sharing you experience 😃

  • craig07920
    craig07920 Guest

    Posted

    Hello Wendi,

    It is nice to see a post from you and just sorry to hear things have been so tough at the moment still. Going through the whole mono experience was one of the very worst of my life and I just wouldn't wish it on anyone, and I really do empathise with all the physical, mental and emotional struggles that it brings, and just coping with the longevity and intensity of the whole thing.

    I just wanted to write to offer some encouragement and hope Wendi, to let you know that I was in a similar place as you after 9 months - very weary, discouraged and feeling like my progress had been somewhat minimal and just wondering when or if things would ever improve. I remember at 9 months having a terrible setback with joint and muscle pain and weird kind of bruising and I was just at the end of my tether all I could do was pray and just hope that God would have mercy.

    For me it was shortly after that period, after about 10 months or so, I started to see a turning point Wendi. The intensity of the symptoms started to lift and started to feel more human again, don't get me wrong it did still take me a little while to get back to full strength and health but my experience was that Year 2 was one of real recovery and like a walk in the park compared to the horrors of Year 1. So I really want to reassure you that this does get better with time Wendi and things won't always be the way they are now - it really can just take extended time for your body to recover from this but it doesn't mean to say it won't fully recovery- because it will. Everyone's own experience and timescale with recovery seems to be unique to them and different, but absolutely from lots of recovery stories I've read on here that period of 9-15 months seems to be quite a common period where a significant change can happen - and it can be very normal with this thing to feel 'stuck' at the same level for a long time and take a big step forward in a short space of time, so please hang in there Wendi definitely thinking about you and believing you are going to get better from this - trusting God with that.

    Vitamins and herbs really helped me during recovery, taking a good strong multi-vitamin per day (I take Immunace Extra here in the UK), higher doses of Vitamin C (1000mg-3000mg per day), a B100 complex vitamin per day (great for nervous system and energy levels) and immune boosting herbs like siberian ginseng, echinacea, oregano. These can all be really helpful. The baking soda remedy for a week or two also can be very helpful - 1/2 teaspoon full of baking soda dissolved in plain water taken on an empty stomach twice per day - but they say not to do that for longer periods because it is very alkaline, but it can be very good for nasty viruses.

    So sorry to hear your friend has been going through such a hard time for 3 years - that is awful to hear, but definitely be assured that this is not the case for everyone Wendi, most people do make a full recovery before then and just hoping and praying that this can be a very of breakthrough and recovery for you - I believe it is going to be thanks to God - hang in there and do keep in touch and let us know how things are going over the next while.

    Craig

  • Guest
    Guest

    Posted

    Thanks Craig, I do feel some improvement. I don't feel "sick" anymore really I just feel like I am in recovery and still relapsing. Once I came out of the bedridden part of this I have felt progressively better and stronger it's just been extreme baby steps. Even yesterday when I didn't feel well, I managed to get everything on my list accomplished. Last night I slept well so I am coming out of this severe cold relapse. I know it takes time but sometimes it is discouraging when you don't recover from this like you do any other virus. As for my friend.....she is amazing. She has been diagnosed with chronic EBV but tells me that around this time she started feeling much better and after a year she got to her new normal. She managed college and graduated early with this. She functions knowing she might relapse but is used to the relapses and they aren't too bad. Mostly just when her body is off balance and/or hormonal changes. She keeps me optimistic 😃

    With me my mono settled in my digestive tract and that has been the hardest thing to recover. I don't know if it is because I had the enlarged liver and also had IBS prior.....but that and the vibrating have been the hanger ons of my symptoms. I am just looking forward to the time when I can make plans and even if I am having a flare up it is so mild I don't have to cancel. Shooting for spring and nice weather 😃

    I appreciate the words of encouragement.

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