Looking for Support and Sharing Experience

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Im just trying to do some reading to figure out what is going on with me. I'm also trying to avoid self diagnosis from the things I read on the internet but I am pretty tired of trying to find out why I feel the way I do.

I'm a 42 year old male in relatively good health. I don't smoke, don't drink much. I had a terrible flu over Christmas with a 103 fever, dehydration and horrible lung issues. Coudln't breathe without coughing. Each breath had to be a conscious effort and eventually my lungs were sore. I went to the ER on xmas eve to get rehydrated and they said I had the flu.

I recovered from that flu in about 10 days. I never had the flu in my life and this was the most sick I've ever been. Even worse than strep I had as a kid. I have terrible sinuses, removed tonsils and adenoids when i was younger.

About a month after the flu, I then had an eye infection that went from one eye to the other. The left eye swelled up almost 1/2 shut, then the other eye did the same a week later. It lasted about 3 weeks til they returned to normal.

After the eye infection I then was hit with a severe brain fog and extreme weakness. The braid fog was so bad that I could almost describe it as a feeling of being on the edge of passing out. I couldn't concentrate, simple things like swapping 2 people named Andrew's last names in conversation, ofrforgetting things I just talked about. I couldn't sleep very well at all, sitting in bed I honestly felt I was going to die. The last week or so I have had issues with my heart it feels like. It beats harder while lying down, and sometimes it feels like it flutters. For about a week I also felt like I wasn't getting a satisfying breath.

Today my main issue is I'm clumsy along with the heart pumping sensation, I tend to bang glasses when putting them in a cabinet, when I put a glass down I over compensate for the distance and it bangs harder. I am just off on these little things. My hands are weak and tired, my whole body is tired. I struggle to lift things, move my body, think and sleep. Sleeping is very hard this past week. Today while at my desk I felt hot all of a sudden for about an hour. Then it went away. Very odd. I generally just feel out of it, I have a constant brain pressure which seems to be helped by tylenol.

Blood tests all check out well. Cholesterol is good, BP is 125/78 roughly. All kidney functions check out. Alt is a little high however.

I'm working with my doctor to try and work through these things. It's exhausting but she's supportive. I am looking to read about others experience and sharing experience to even see if this is what I am suffering from. I have no idea, just looking for information. Thank you for reading my story.


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  • Posted

    It sounds like you?could have post viral fatigue.? Flu can take your body a long time to recover from and could lead into a longer illness. Have you been tested for glandular fever? I have M.E. and?I first felt unwell after having the flu. I never really felt right again after it and 6 months later was shown to have?glandular fever from a blood test?which I've never really recovered from and was the diagnosed with M.E. You should try and rest as much as you can, eat a healthy diet and try pacing your activities. Your body might just need more time to recover from the virus.??

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  • Posted

    Hi Seed,

    Glad to hear that you are working with a doctor to get a diagnosis. It sounds like you have had enough blood tests to rule out many other diseases that have the same symptoms as CFS. I'm sure your doctor checked your thryroid, Vitamin D, and Vitamin B-12 levels. If you are getting headaches, it wouldn't be a bad idea get an MRI. 

    I was diagnosed 25 years ago; I've had ups and downs with the symptoms for years but I'm able to maintain a part-time teaching position. It is difficult for me to work full time, as I need lots of down time and need to avoid stress. Stress makes my symptoms worse. Pacing myself is the best remedy along with light to moderate exercise. Also, I take Doxepin in the evening to help with sleep. One of the symptoms of CFS is not being able to sleep even though one is exhausted. Sleep is crtical, so I would ask you doctor to prescibe you something for that. 

    My daughter was diagnosed with Post Viral Syndrome at age 16. She also had a very bad flu with high fever. Although she is not the same as she was before, she is significantly better and is able to attend college full time. She was also prescribed something to help with sleep.

    I'm so sorry to hear about what you are going through. It is so frustrating not knowing what is going on, but it sounds like you have a doctor who is willing to do all the necesssary tests to rule out other illnesses. Please let your dr know that you are not sleeping. Hope this helps and good luck. KPD

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  • Posted

    I little update, think I'll just dump how things go in here. Thinking of starting a blog.

    I started to get Vitamin B12 boosters at the end of each month.

    I am taking supplements with emphasis on Vitamin B12 and D3 and CoQ10.

    I went to an ENT and nothing much to report there. All was normal.

    My heart palpatations were getting so bad I was assigned a heart montitor which turned up normal over 24 hour period. That surprised me.

    I twitch hard at night sometimes, usually when i'm transitioning to sleep.

    When i finally fall asleep, usually around 3am I sleep very deeply. More than I have in I can't remember when.

    I started taking flonase about a month ago and this has helped I feel.

    I started amoxicillin as advised from my doctor. I had a really bad couple of nights. I couldn't sleep. I couldn't think straight, maybe a panic attack? (don't know never had one, but anxiety was high) I felt so off, like feeling I was about to pass out. That has since calmed down but it goes in waves.

    I have a lingering cough and sore neck

    My body feels flat all the time. It's even a struggle to life my arms sometimes. Just a general feel like I should be sleeping.

    When I do get moving I do ok. My mornings feel like I'm trying to start an old lawn mower, the lawn mower being me of course.

    I walk much slower and think and process much more slowly. This is actually very calming oddly enough.

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    • Posted

      I should add my EBV panel came back with:

      Component Your Value Standard Range

      EBV nuc IgG, Ser, Ql, EIA POSITIVE    

      EBV VCAIgG, eia POSITIVE    

      EBV capsid IgM, EIA NEGATIVE    


      I asked my doctor about it and she said the results mean I was exposed to the virus at some point in my life but doesn't mean I was recently. Not sure how to interpret that but she seemed to not really worry about it.  

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    • Posted

      You might also find listening to relaxation CDs and yoga helpful - they can both help you sleep better and relax you. The heart palpitations may be caused by anxiety. If you have have a lot of strange symptoms going on on your body this will make you stressed which will cause more strange symptoms like overbreathing, racing heart, etc. It's a vicious circle!! You might also find keeping a diary helpful to keep track of your illness and what seems to help you and what makes you worse. If you've been exposed to a virus at some point your immune system could be weak and still trying to fight it.

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