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3ish month UPDATE - Mono (??)

Posted , 5 users are following.

vancityraincity
vancityraincity

Hey guys, 

I just wanted to post an update on my progress for all of you who just started going through this. Recap for those of you who aren't familiar with my situation: 3+ months ago I fell ill with DEBILITATING fatigue (bed bound no energy to make myself food, even showering was a struggle for a few weeks), chills, lack of appetite,  nausea, super sensitive to smells and tase for a few days, disorientation the first few days (would be confused after a nap and have strange vivid 3 second dreams which would wake me up every few minutes), joint and muscle pain, headaches, back pain, night sweats, and a mild sore throat. Monospot was negative, blood tests showed past EBV and CBV infection (though CBV test was taken about 3 months in so maybe the early antigens just didn't show at this point). The doctors concluded it was either mono and I was part of the very few % who don't show up (+) on blood tests, OR it was a mono-like virus, OR it was post viral syndrome / CFS. Yeah... no formal diagnosis but I always believed it was mono just because of my symptoms and the duration. 

Anyways. I am now 3 months in. The fatigue has pretty much gone away - I am able to get out of the house for hours, clean, shop, visit, cook again. I haven't gone back to work yet, but I am planning on going back in a few weeks, starting part time and seeing how my body reacts to it and then building up my hours. The only symptoms that I really have left is muscle and joint pain and occasionally feeling flu like, mostly when I am tired and it's time for bed or if I am stressed. 

If you are reading this, if you haven't received an official mono diagnosis.. make sure you get comprehensive blood work done and see your GP but be OK with not having a definitive answer. I know it's hard not having a definite diagnosis.. I was googling my symptoms for weeks and stressing myself... please relax as much as possible. 

At the beginning, it was emotionally difficult being in bed for weeks and not feeling any better despite getting lots of rest. Be patient, read positive recovery stories, take supplements, and meditate. Come to this forum if you are stressing.. lots of great people to cheer you up and reassure you that you are not alone in this experience. 

I wanted to share my recovery progress because there is a lot of scary stuff on the internet and not enough positive stories. But to be honest, the reason why you might not read as many "Hey, I recovered!" stories is because once people feel better they are NOT on the forums. They are living life again... as you will too. The only reason I am sharing my progress is because I don't want anyone else feeling as freaked out as I was. I want to reassure people things will slowly start to improve. I am not 100% yet but in a few months, I am optimistic that I will be feeling better than I am today. 

My advice: REST. If you can, take some time off work. Ask your family and friends for help cooking, driving, etc. Get blood work done to rule out other possible conditions. Stay in touch with your doctor. Eat as much as you can so your body has strength. Read positive stories, meditate, and stop googling your symptoms. And believe in your own recovery, just remember you must be patient. Also, when you start to feel better... take it easy! I did not follow this advice that other people gave me and had a bad relapse for several weeks - bedbound. Also, please get lots of sleep. Even as I'm recovering, I can feel my body feeling terrible when I am tired. 

I hope this post brings someone some reassurance. I will update again when I am 100% back at work full time and at the gym too (used to work out intensely ... miss it). 

0 likes, 13 replies

13 Replies

  • wesley25191
    wesley25191 vancityraincity

    Posted

    I’m going through the same thing I feel like absolute crap some days and fine others , I too mainly feel bad at night or evening I get hot flashes and super fatigued and drained and sometimes I have to go to bed for it to go away or sometimes it comes and goes , I also have a ton of extra mucous in my throat and lungs and I get super sore some days I feel like I’m 90! And I’m 23! lol some mornings I wake up stiff as cement I finally got blood work done last week and it showed Posotive for Antibodys which I knew it would cause I had a 2 week period of bad mono when I was young but my test also was elevated for antigen which I guess means it’s active now ( this has been going on 3 months now also ) I’m guessing you have been feeling pretty similar 
    • vancityraincity
      vancityraincity wesley25191

      Posted

      Hi Wesley,

      Yes... I still have some days where I'm like darn... BUT they are waaaay less intense and less frequent. 6 weeks ago I was gasping for air going to the washroom which was 10 feet away. Last weekend (5 weeks later) I was out and about for 6 hours visiting family, friends, and running errands. At the end of the day I felt tired but it wasn't that terrifying fatigue that I experienced near the beginning. It was just my body telling me that it's reached the limit, for today. I have been seeing small improvements each week.. some weeks it seems like recovery has halted or is stagnant.. but try to compare yourself at your WORST to today.. there is absolutely no comparison. 

      Good luck with your recovery, I am optimistic you will also feel better soon. Every body is different .. each recovery has a different pace.. but we are ALL on our way there. 

    • wesley25191
      wesley25191 vancityraincity

      Posted

      Yea I even go a few days to a week of feeling great then it happens again but it will eventually get better your right and I hope you recover fully as well my friend 
  • wesley25191
    wesley25191 vancityraincity

    Posted

    And also I just read your first post about this and I have had all those symptoms to a few every one of them 
  • wesley25191
    wesley25191 vancityraincity

    Posted

    The random lymph nodes swelling in the neck , armpits, groin, shoulders , the weird pain sensations in legs and arms I’ve had it all in the past few months I thought I was dying of some cancer or weird disease lol
  • vancityraincity
    vancityraincity

    Posted

    I am also 25.. previously active healthy GO GO GO type of person .. so it was shocking and a scary feeling how the fatigue knocked me off my feet. I couldn't do anything by myself for a few days and relied on my boyfriend for many things (even driving me to dr who was 5 mins away and I LOVE driving my car..) 

     

    • wesley25191
      wesley25191 vancityraincity

      Posted

      Same I’m a firefighter / EMT for the county I live in so I was huge on going to the gym 4 times a week now I just don’t have energy to but I force my self to workout at work , did you experience the hot flashes too? Like some one cranked on the heat but no fever At all lol
    • vancityraincity
      vancityraincity wesley25191

      Posted

      Hi wesley,

      Yes I did get hot flashes they didn't last very long maybe a week. Then I got drenching night sweats for a few weeks but low body temperature during the sweats? Weird. The night sweats went away for a few weeks, then they came back. Now I haven't had them for several weeks. Of course google night sweats + fatigue and it's just a nightmare LOL. 

    • wesley25191
      wesley25191 vancityraincity

      Posted

      Yes!! Lol the internet convinces you that you have HIV or something horrible like that ! Lol but yea it sucks forsure but I take like 3000mg of vitamin C everyday and probiotics and that has seemed to help 
  • craig07920
    craig07920 vancityraincity

    Posted

    Hey Van,

    That is a great post you put up, thanks so much for it. Just hoping your recovery continues to go in the right direction, still thinking about you and rooting for you today. Finding things hard myself at the moment with real pain and depression because of my back, any prayers gratefully appreciated this day.

    Well done on the progress you've made so far Van, hang in there.

    Craig

  • phacelia
    phacelia vancityraincity

    Posted

    Thank you for sharing! I am so happy things have improved for you! smile

    I concur with all of your advice. Avoid stress at all costs, which is really difficult because the illness itself is so stressful, lol.

    You and I seem to be pretty similar at the moment. 

    I am around 3.5 months and have really started to turn the corner. Well, again, I should say - I just came out of a bad 3-week relapse.

    I have finally been feeling more like myself. The biggest improvements are psychological. That heavy depression blanket seems to have lifted, and the anxiety is much lessened. The fatigue and weakness are still there, but I am finally able to take trips into town and take short walks outdoors. I still have to severely limit my activity levels, but everything seems to be stable at the moment.

    My upper rib glands still bother me, but not as bad. And I still have general aches and pains and occasional headaches.

    Like you both, everything is worse in the evenings when I am tired, but it isn't as overwhelming as it was.

    I would say I am at about 50-60% physically (as opposed to 20-30% a week or two ago), but I'm hoping that was my last relapse. So I am going to be SUPER careful, this time around. No more 2.5 mile hikes, anytime soon! (That's what triggered my last relapse.)

    I did start to feel better when I began taking all the supplements, but then I may have been on the upswing, anyhow. I will continue them, however.

    I have been taking:

    - iron (food-based)

    - B6

    - B12

    - astragalus root

    - cod liver oil

    - vitamin C (1,000 mg daily

    - ashwagandha

    - food-based multivitamin

    I know we are all missing our old lives (I was extremely active, like you all). I can't wait to get back to hiking, kayaking, fishing, or even just running and playing with my 4-yr-old. Not to mention the fact that I haven't been able to do any farm chores (I know my husband is ready for me to take over again, lol), or much in the way of household chores.

    Every day gets a little better. There is hope! smile 

     

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