I Just Want to go Back to Life...

Posted , 5 users are following.

Hi everyone. 

I've been following your posts for a month. I've found a lot of relief with posts from Craig, 40, Sarah, Mono and others. Craig especially has relieved so much of my anxiety

I wasn't sure if I wanted to post or not. I wasn't sure if you all were actual people and if I would get the support I needed. I found that you all try to help as much as possible and I am in need of that now. 

My story: 

December 14, 2016 I got a really bad sore throat for around 3 days. It didn't feel like a cold just sand paper in my throat. Gargled with salt and water and it was gone. Christmas Eve 2016 I felt really weird. Really, really, really tired but was unable to really sleep. It was like a twilight sleep. Didn't feel like I was coming down with a cold. It felt as if my blood was different. Woke up Christmas morning and I was not better. I couldn't eat, my stomach hurt really bad.  I had previously gone to the GI doctor for a stitch pain in my abdomen that I could not figure what was going on.  Of course they ran no tests and gave me omeprozal for acid reflux which I didn't have. I had no heartburn or stomach burning.  I took anyway hoping that it would solve my problem.  It made me really tired. Now that I look back I realize it was the mono. Well, I called the doctor to tell him it was not working and making me feel tired. He prescribed protonix. Took the protonix on Christmas because I needed the stomach pain to stop. It made my throat and chest burn for days. I could not eat anything without my throat and chest buring. I lost about 25lbs in less than a month. I stoped everything. I was miserable January and February. My stomach was in a knot all the time. I went to the doctor so many times to figure out what was wrong with me. I went to a different doctor and he tested me for mono in February. March I decided I was not going to a regular physician because they were of no help. I decided to see a naturopathic doctor. He gave me some supplements and took away some foods and added more greens. That helped a little but not as much as I wanted. Still tired all the time, stomach pain, throat and chest burning pain. 

I am 8 months in now. I look back and know that I've come a long way. I continuously have throat and chest burning. I have aches pain throughout my body. The pains and fatigue comes in cycles. I'll be ok for a couple days then it hit me with a feeling as if I'm coming down with a cold. Then I'll be unable to sleep. I had really bad insomnia in the beginning. I have this tingling sensation in my legs below my knee.

I am getting frustrated and inpatient with it all.  No one believes me. They think that I'm fine and it's all in my head. For some reason there is a coorelation between the fatigue and depression. Whenever I have fatigue I feel the worst mentally. 

I am looking for support because my family is just not realizing all that my body is going through and I'm feeling like this will never go away. Also I am terrified of it turning into something worst. 

Thank you for taking the time to read this. 

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  • Posted

    My family thinks I'm a hysteric and/or hypochondriac. It's so normal that it should be listed as a symptom! What was the result of your mono test? 

    Hang in there. We believe you.  

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    • Posted

      I have locate my results. I know from reading others, it was really high numbers. The doctor told me it was "reactivated" but I don't recall ever having it before. This is something you don't forget. The doctor just called and said "you have mono and you have to let it run its course". At the time I was ok with it, it was an end to a means. Everything I read said to give it about 6 weeks. 6 weeks came and went but what I really couldn't understand was that everything also said you only get it once but I've gotten it a second time. I didn't know what that meant for me and if it would continuously reactivate. So many questions, so many fears and doctors were of no help to me which left me hopeless and afraid of my future. 

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    • Posted

      Hi Sarah, 

      I found my test results which reads as follows: 

      EBV VCA IgG  475.0 H

      EBV VCA IgM  <10.0

      EPSTEIN-BAR EARLY AG IgG  22.9 H 

      EPSTEIN-BARR NUCLEAR AG IgG   >600.0 H

      This was done is February. I usually have all of my reports in one place but was unable to locate this one. 

      Were yours this high? 

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  • Posted

    Hi Shawna,

    I know how frustrating it is, my daughter has it and I am glad I had it first so I can understand how she feels.

    Aside from the weight loss we all look very normal and since we don"t have obvious symptoms people find it hard to understand, unless you have had this horrible virus there is no way to describe the feelings that it gives you nausea, anxious feelings, aches, tingling extremities, palpations, exhaustion and depressed mood to name a few. The fatigue and depression seem to go hand in hand.

    It will eventually get better, post anytime this is a great support system with people who understand

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    • Posted

      Hi Mono

      I've been reading from your post that your daughter is really struggling.  I am so sorry that any of us has to go through this virus. 

      I've lost a lot of weight and can't seem to keep weight on. I was small to begin with so that 25lbs that I lost took me down to 100-105 and I'm 5'6". Do you struggle with this as well? 

      No one understands! My husband feels that I should just continue on with life as if nothing is wrong.  It is so hard when your hope of getting rid of this virus and being healthy again demenishes with each cycle. You get better for a while then all of a sudden you are back to square one. 

      Maybe I'm being impatient with myself but I constantly think who feels this way for almost an entire year?  

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    • Posted

      Hi Shawna,

      I lost fifteen pounds and when I was feeling better and appetite returned I gained most back, then in July I had a setback ( I was trying to get back to my normal routine), then the nausea came back and I lost another three pounds. I felt better the last two days but taking it easy. My daughter has had the gastro issues more than I have. 

      Did they check you for ulcer? it must be hard to have the burning upset stomach. I havent had the burning but the nausea is something else.

       

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    • Posted

      Hi Mono, 

      I did the same thing. I tried to get back to my normal routine gained 20 lbs back in May/June by July my symptoms came back with nausea added.  Lost about 15 lbs.  It's always been really easy for me to lose weight. 

      I've  been scoped twice this year. First one done in January before I knew I had mono but was sick. The doctor stated I had esophagitis and gastritis. Didn't have this before they gave me the protonix. I think them giving me the protonix while I had mono messed my entire digestive system up. I never had stomach pain and throat pain until then. Then in April I was scoped again and the doctor said it was clear he seen no evidence of anything. Weird.  I'm just hoping this is all part of the virus. 

      I'm praying for you and your daughter to be well soon. 

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    • Posted

      Hi Shawna,

      My daughter has gastritis also, she had bladder infection in the first few months, this has gone away, gastritis is  big problem for her and she eats because she has to, she has also lost weight.

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    • Posted

      Hi Mono, 

      Has she had gastritis since the begining of her virus? 

      The stomach pain I felt in the begining was a tight feeling in my upper abdomen just below my sternum. It felt as though my stomach was clinched tight at all times.  This pain lasted for four straight months and one day it just disappeared. It came back a little in July when I had a setback. Now it's a burning sensation.  

      What are some of her symptoms she is struggling with? 

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  • Posted

    Ahhhh shawna, 

    it is just horrific isn't it. I was diagnosed Dec 5th 2016 and I came down feeling bad on Christmas Day, felt like the only person suffering with this.

    yeah, I'm not sure people can understand exactly how we are feeling or why we should be so depressive, definately not in my head, just another symptom.

    i just want to go to life too..... Sometimes I'm nervous about doing things as it might be 'too much' or set me back, hard to know.

    The people on this forum are lovely. Know know will understand better!!

    xcarolinex

     

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    • Posted

      Mono sure lives up to its name. It makes you feel isolated and alone because you can't get anyone to understand what you're going through. They believe it's the normal aches and pain and the normal fatigue you get from over exerting yourself or not getting enough sleep but this is something totally different. 

      I am very nervous about doing anything right now. I'm afraid to eat because I'm not sure what exactly this burning sensation is in my throat and chest.

      I was running a couple weeks ago but that brought about another cycle. I thought I was well enough to start jogging again as I was jogging for two weeks prior then all the feelings started to return.  That was a big mistake. I started jogging because my heart rate would constantly be in the 100's for no reason and it helps with my anxiety. It always  has helped. After jogging I would feel good and my heart rate would come down. 

      I am so thankful that I can come here and talk about what's happening to my body and someone understands and sympathize with me.  

      I am believing we will get back to life soon without any residual effects of mono. 

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  • Posted

    Thank you all for responding and giving me hope. We all need it. 

    My question to you all on the forum is, what are there supplements that you are taking to combat this virus? How long have you been taking them? Do you find that they are helping in some way or another? 

    I was taking B12, Olive leaf extract, vit A, and magnesium but I stopped after the naturopathic doctor said that I was ok to stop them.  I just started taking aloe Vera juice for my throat. I'm waiting to see if that helps. 

    I'm worried that I will have to take these supplements for life if I don't let my body fight it on its own. Let me know what your thoughts are about that. I just don't like taking anything. 

    Also, how long have you had mono and what are your symptoms? 

    I'm 35. I've had mono for 8 months now. My symptoms now are fatigue-to various degrees, nausea, throat and and chest burning/pain. The throat and chest pain really gets me down. Muscle pain and twitches, sometimes feeling as though I'm coming down with a cold with chills-this doesn't happen often,  broken sleep but I'm happy I am able to fall asleep. The brain fog has gone away. 

     

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    • Posted

       Hi shawna.

      im 40 and was diagnosed in Dec 2016, so about 9 months now  Ish?!

      i have fatigue, some really good days now. Sore throat on and off, slight ache in arms, nausea and low mood.

      i take a good multi vitamin, that's it. I did take a tonic for a while, not sure they help at all?!?  I try and eat healthily and eat fresh fruit. Haven't touched alcohol

      since last year.😕 .

      Because The progress is so slow, it's hard to see improvement. I keep a diary of my journey.

      it's hard, I wonder when I'll be 'normal' again.

      where abouts are you from?

      caroline x

       

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    • Posted

      Hi Caroline,

      I live in Dallas, Texas originally from Michigan.  

      I try to eat healthy too. Lots and lots of fruits and veggies. A lot of yogurt too. I don't want to lose anymore weight so I don't always eat healthy.  But I eat more healthier than I use to. I beat myself up because I had some wine in June. I didn't have any symptoms for an entire month. I thought the virus left but to my surprise it came back full force with a new symptom NAUSEA, stomach pain again throat pain and brain fog.😒 Ridiculous,  I thought. I just knew I was free a clear. But like someone said on this forum "you have to respect the virus". Ugh! I just can't deal with the nausea. The pain...ok but not the nausea. If I knew then what I know now. I never in my life would thought a virus that is soooo common can have you feeling so low and effect your body the way that it does. 

      We just have to get it down so we will not have any of the effects of it. They say everyone has the virus in their body but it's when the mono gets activated is when it causes so many problems. I have been on google too much. 😂 

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    • Posted

      Hi Shawna,

      I have had it since last October and my daughter got it in November. I listed all my symptoms above, I take vitamin D and vitamin C, green tea for anti inflammatory properties. I use advil when the aches hit or I feel flu like.

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