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Scared :(

Posted , 7 users are following.

vancityraincity
vancityraincity

Hey guys,

Week 11 into some “virus”.  I am so freaked out. I feel so weak and fatigued, my lower back feels uncomfortable, my neck feels inflamed, I have nausea, shortness of breath. 

I am so scared that my doctors missed something, that this isn’t just some virus. It’s been so long now. I’ve had so many tests done without answers. I’m on this forum because I tested for past EBV and my initial symptoms were just like all the mono ones (minus liver swelling or crazy sore throat.. just mild sore throat).

I am on edge all the time and afraid sometimes that my body won’t be able to take it much longer. 

1 like, 13 replies

13 Replies

  • jade35683
    jade35683 vancityraincity

    Posted

    Hi,

    I’ve had these symptoms for about 6 months now and can relate. I’ve had so many tests done and doctors don’t know what’s wrong. Back in August they said i had a past virus of mono but never had any symptoms til now. I really do hope we can get through this cause i too have had thoughts that i can’t take this much longer. 

    • vancityraincity
      vancityraincity jade35683

      Posted

      Thank you for the reply, it is always a strange relief when someone is going through something similar (though I wouldn’t wish it on my worst enemy)

      May I ask what your symptoms have been and what tests you’ve had? 

      I’ve had fatigue, shortness of breath, lymph node swelling on one side of neck and under jaw. Chest pains. I’ve had headaches, lack of appetite, some days with extreme strong sense of smell, chills with no fever, joint aches and stiffness, abdominal discomfort, back pain. 

      I’ve been tested for EBV (past infection positive) but two negative monospots. I am wondering maybe this is mono caused by CMV or a different virus? 

      I’ve had complete blood work done, even testing some cancer markers (all negative). All my vitamin levels etc are normal. My WBC is normal but on the lower side of the normal range - this concerns me but doctors seem unconcerned (I’ve seen MANY). I’ve had chest x rays, EKG, abdominal ultrasound, CT of head, chest, abdomen. I had a biopsy of a thyroid module - benign. I’ve been tested for diabetes, negative. Doctors just don’t know what’s happening, so they assume it’s something viral or post viral. I don’t understand how they can make that assumption when nothing from my blood tests suggests a virus. I feel so scared.. how can nobody know? I was healthy and suddenly one day my whole world got flipped upside down. I feel so lonely and scared sad your reply is so appreciated 

    • jade35683
      jade35683 vancityraincity

      Posted

      Exactly how I feel as well. My symptoms have been fatigue, horrible nausea, sometimes elevated fever, joint pain, occasional stomach discomfort. At the beginning I had a rash on my chest and didn’t know what it was from, thought i was having an allergic reaction to something. Also recently have been getting bad head aches and a sore throat. I have been tested for mono, lyme disease, and so much more I forget all of them. I have been to every doctor you can think of. At first I thought it may have been the birth control i was on because i had been on it for so long and thought my body maybe needed a break. Then I went to my naturopath and they said I have the antibodies for Hashimotos which is a thyroid disease, but needed no medication. I started taking Vitamin C regularly because I had been suffering for so long I just assumed it’s still mono. I stopped taking them because I was taking them so much it caused my nausea to worsen, as it should. Recently, I have been hearing more and more people having the same symptoms as me feeling sick all the time and I too am scared because nobody is getting the help that they need. I hope we both find peace and health soon. Be sure to check in if you start to feel better. 
  • 40with.gf.
    40with.gf. vancityraincity

    Posted

    Hi van,

    i do do understand how you are feeling because this is just me all over!! I also showed that I had the past infection for glandular fever. I felt ill from October 16, although could still work and function, I had the Test taken in dec16. I never got properly ill until January 17. So it did take a while to kick in!! So I've been suffering for 13 months and things are so much better now. But I am not fully there yet.....

    things will get better for you, they definately will, it just takes time, try not to worry 

    Caroline xx

    • jade35683
      jade35683 40with.gf.

      Posted

      Hi,

      What were your main symptoms? What made you go to the doctor to see what was wrong?

    • 40with.gf.
      40with.gf. jade35683

      Posted

      Hi,

      basically, cloudy urine!!

      i had slight lymph nodes up, and slight sore throat, nothing major, they did routine test, diabetes etc and took bloods, that's when I found out the past infection. Then it took some weeks to kick in properly. The only thing on the low side was my cortisol, every other test fine! 

      My endocrinologist said to me, I will recover fully, in another 6-12 months.... So that would be 18-24 months overall!!! But I know I'm getting better, I am soooo much better now... It's the relapses that hurt! So disheartening.

      x

       

  • craig07920
    craig07920 vancityraincity

    Posted

    Hi Van,

    Really feeling your pain man, it's so horrible to go through what you're going through, and I do understand the worry and fears, especially when it's past EBV that have tested positive for. It certainly sounds in line with an EBV experience, remember this virus affects different people differenty, so it can affect someone worse in one way and not affect another person in that way at all.

    You've done the right thing by seeing you doctor and getting checked out, take heart that they're not finding anything else although I get it that it doesn't help at all when you can't seem to get an explanation for how you're feeling. I was the same going to the doctor's all the time because I thought there must be something else and that mono / EBV can't be as harsh as it was, but in the end it was that mono was as harsh as that so it is common to go through that experience do want to reassure you of that - but definitely do keep on at the doctor if not feeling right, it's better to do that for sure, even if just for peace of mind which I know is so hard to find when going through this.

    Thinking of you man and just take it one day at a time, don't look far ahead and your body is stronger than you think, you will make it through I truly truly believe that - just get plenty of rest and look after yourself, being kind to yourself is the best present at this time and just eat healthy / drink water / take vitamins, etc.

    Craig

  • rhonda21886
    rhonda21886 vancityraincity

    Posted

    Hi Van, I definitely relate to feeling that your body can't hold up under the vicious attack of the virus. I would think that nothing could suffer so long and do without sleep so long and continue to survive. But we are more resilient than we can imagine! I now thank God first thing each morning for my healing and pray for each one who is going through this.

    The anxiety feeds off the symptoms. Once your body is feeling better your anxiety will decrease.

    My neck is still bothersome sometimes.

    Truly I am pained as I read the post of those posting. I know that there are better days ahead but when each minute is so filled with suffering it is hard to see past that minute. The minutes roll into hours, days, weeks and then months. Then you will have minutes, hours, and days with much improvements! It will get better! For most of us the improvements seem to have been very very gradual but faster for others.

    I can remember the feeling of desperation. Hang in there. Believe you will get better because you will!

    Prayers, Rhonda

    • craig07920
      craig07920 rhonda21886

      Posted

      Great words of hope and encouragement Rhonda, thanks so much. I think Van and so many folks on the forum needing that right now! Hope you are feeling well and thanks as always for kind words and prayers for healing, that's so important when you're feeling weary and weak for others to pray for you.

      Craig

  • vancityraincity
    vancityraincity

    Posted

    So... I have a funny and sad story to share with you all. I was referred to a doctor by a family friend, who gave a raving review etc. The doctor comes in, asks what’s going on. I explain, I’ve been very very ill for 3 months and so far there has been no answer. I am desperate and I’m wondering if maybe you have any thoughts as to what’s going on. She’s like.... I don’t give second opinions. I said, well... I don’t have any formal diagnoses so it’s not really a second opinion it’s a first opinion 😂 then she says “what if I can’t help you? What if I don’t know? What if we try to figure it out can’t?” ...... omg. Hahahaha. I’m laughing now but I just burst into tears at the doctors office. WHAT KIND OF MEDICAL PROFESSIONAL ASKS THAT? what is the point of that? The whole appt was so negative and it just seemed like she was determined not to help lol. I am laughing because I can’t cry anymore. So in the end she is going to redo some blood work and check a few other things... but the whole appt was so strange and she just abruptly left the room without saying bye 😂 what a horrible experience. I am exhausted trying to figure out what’s going on to

    help myself. Especially when I’m met with resistance from the people who I do desperately need to help me. It’s like drowning and having the lifeguard looking at you and shrugging his shoulders.

    • 40with.gf.
      40with.gf. vancityraincity

      Posted

      Oh van, I know what you mean about having to laugh as you have no more tears in you and it's unbelievable that you just have to laugh.

      I'll be your doctor😂. You are at 3 months and in my opinion, still very early in kicking this viruses backside!! My doctor said to me originally, 6 months to a year....I have past that now and the endocrinologist that I've seen said another 6 months to a year ( remember that's just for me) you may be quicker (let's hope so)  I've had most of the symptoms you have.  But I feel like I am improving a lot recently. I've just done 2 good straight weeks , after the usual ups and downs of the last few months, thinking I'm better then not.

      mental attitude and positive thoughts are amazing, know you will get better, believe you will, it helps, think about that the things you CAN do. Have a great diet, cut out sugar, eat veggies, get some fresh air, get little excercise but don't push stuff and in time things will slowly turn around, I promise you they will. I know it's easier to say all this and it's hard when your at a low point (I know)  but things will come good. Try not to worry about it and do something to distract you from it, if you can?! 

      Caroline x

    • catchthebus
      catchthebus vancityraincity

      Posted

      I totally understand you. This was the first time I had to deal with medical system as well and they coudn't give me a proper diagnosis and said that I'm fine when I felt like i was dying. If you have tested positive for EBV then there is nothing you can do, just have to wait, most of the people here are struggling for 9+ months.

    • craig07920
      craig07920 vancityraincity

      Posted

      Hey Van,

      I totally empathise with your this kind of scenario, it's bad enough when you're dealing with the virus and the associated symptoms and anxiety but having to deal with a 'professional' who treats you like that is totally appalling. Unfortunately it seems all too common, I've been so disappointed and upset by many doctors I've seen in the past, and you were only just to be in tears because all you were seeking was some help or even at least examination - for someone to show no compassion like that is a terrible thing, but remember there's always compassion with God and He knows the bigger picture and will look after you I believe and bring full recovery.

      Hang in there and so sorry you had to go through this sad

      Craig

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