Confused/cfs/mono

Posted , 6 users are following.

Been to my docs and they are on about referring me to a rheumotologist?? Im so scared that it might be cfs?? And i will have this forever im a young woman with a family and it mills me to think this is the case? Has any one else been referred and what was your outcome?? They are putting it down to all the pains i keep getting over my body and because ive had it 6 months sad 

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  • Posted

    Ive had mono for 10 months now and i still experience fatigue. At 6 months i wasnt even getting out of bed because of my fatigue and pain. Mono is a funny virus and there is nothing doctors can really do about it. Yes its possible to get cfs from glandular fever but it seems to take about a year to recover from it so give yourself some more time before considering cfs. Only now am i beginning to get back to my normal life, dont stress yourself out this illness is a waiting game. I kept a diary and each day wrote how i was feeling, you'll find that if you look back a month or two there will be a big difference. Focus on the small victories and try not to dwell on how rubbish you feel, i know its hard ive been there! Do somethimg that will make you feel proud at the end of the day. For me the worst time was between 4 and 8 months i was in bed the whole time and developed depression and anxiety i think the winter contributed aswell. Youll get there it just takes forever! Every day you are closer to getting better no matter how bad you feelsmile

    Hope this helps

    maisie

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    • Posted

      I am in 26 month and still feel like s**t. Feels like it will never go away. Sure I feel better than before, but still cant live normal life. I dont even make it theough the day.
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    • Posted

      Thanks maisie how old are you if you dont mind me asking?? Weve all been through such a rough time wish we could all just rid of it your right i think i need to give myself more time and not rule out hope to soon wishing you a full recovery smile
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    • Posted

      Still thinking about you Brent, I really feel you have been suffering so much lately and just feel the urge to say that I think there is a breakthrough on its way for you, with God being the mastermind of this breakthrough.

      Just take things slow for now hang in there man, don't expect too much of yourself - I absolutely believe you're going to make a full recovery still, not waivering in that belief one bit even though it's been a long time - this is not your fault Brent don't beat yourself up and hoping for a good and less harsh day / period ahead.

      Craig

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    • Posted

      Thank you for your support and encouragement. You brought me to tears. I am ready to give up on everything. My life is a mess. Having to deal with this illness alone and trying to maintain somewhat of a life is taking a toll on me. No one understands what it is like to be ill for so long. Not even doctors. 
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    • Posted

      You're right Brent noone that hasn't been through this virus or similar type illnesses understand what it's like and how debilitating it can be physically, emotionally and mentallyh. Dealing with things alone is so hard Brent, if there is anyone you can talk to please do because carrying this on your own is a terrible burden. I know others don't always truly understand but if there is someone you trust that will listen to you take a chance and confide in them. Even if it's just seeking help through the medical profession, I've lately been seeking to hook up with a counsellor but hard to get without paying unfortunately.

      Please don't give up Brent, remember when you're weary, like I know you are, it's okay to stop fighting against things and just rest. Resting isn't giving up, your body just needs time still, and you will get the strength to get through, I'm confident that God will provide that absolutely.

      Take care and remember message any time.

      Craig

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  • Posted

    Hi Poppy,

    I was referred to a rheumatologist after about 9 months of the virus because I was getting weird pains in my joints, weird bruisng too. The consultant couldn't find anything, and it was just from the mono.

    I really really do want to reassure you that I don't think you have CFS - remember it can take longer than 6 months unfortunately to make a full recovery. I was still struggling quite badly at 6 months and it wasn't really until 10 months until I started to see things improve. I think it's wrong that doctors scaremonger people and write people off as having CFS after 6 months without knowing the true course of this virus, there is definitely a difference between CFS and post viral and what happens in most cases with mono is post viral - it can take a while yes but it does go away, completely, and you return to full health again.

    Hang in there Poppy and remember you don't have to accept what that doctor said - there is still lots of hope for your full recovery and hope you get to see the rheumatologist soon and that they can be helpful.

    Craig

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    • Posted

      Craig is right, just wanted to show you it can take long even if its just mono and it doesnt have to be cfs. From what ive read cfs feels much different than what I experienced with mono. 
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    • Posted

      Hey Lob,

      Definitely agree that the majority of people who experience the virus for a prolonged period, longer than 6 months, don't have CFS and it's just the body taking longer to recovery from the post viral effects - everyone heals in their own way and in God's timing, trusting Him with it for you Lob as I know you've been through a terrible time.

      I absolutely still believe you're going to get there Lob - I was the same age when I had the virus and thought I would never get through it - I know you're feeling the same way right now, but remember you're young and body has amazing powers of recovery still, even though it's in a weary battle right now, it WILL come through it and you WILL recover, even though this has been going on so long. I totally believe that and please hang in there and remember if you can talk to someone that's a big thing too as it's so hard to deal with this on your own. Praying for your total healing Lob in Jesus name. Thinking about you and remember don't expect too much from yourself and try not to beat yourself up as this would affect anyone this horrible virus going on so long.

      Craig

       

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    • Posted

      Hi again craig thank you for you reply your right i should really give myself more time as you know yourself the longer it goes on so does your hope sad  just trying to find ways of remaining positive!! If you dont mind me asking what tests did you have done when you say they couldnt find  anything? I thought there was no certain test for  Cfs? Soo fed up.
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    • Posted

      Hi lob i really feel for you being ill for all this time? Did doctors mention cfs to you or not? Wish we could all just have a speedy recovery its so draining feels like your a prisoner in your own body doesnt it? 
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    • Posted

      Hello Poppy, 

      Not really. I had some doctors tell me that there is no way I can be ill for so long after mono, and some that it can be mono. I dont think the modern medicine understands everything what is going on in your body yet. My GP told me that for some illnesses and especislly with mono,  the number of cases representing differently than whats considered usual far outweights the numbers with usual textbook symptoms. In other words, The usual symptoms are considered usual only because its the most common representation, but it still can be lets say only 30% of all cases and 70% are all the different possible presentations. So more often that not it represents differently than its textbook symptoms.

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    • Posted

      Thanks soo much craig so pleased this forum is here your advice & experience has really helped! Ill have my scan then go from there with the investigating actually sick of going the doctors!

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    • Posted

      I definitley agree lob it seems doctors dont know the ins & outs of this virus and that  makes it more daunting 😳 really just hope with time we get better but i also dont want to wish time away so frustrating!! Really hope you get over this virus very soon is fatigue your main symptom?

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    • Posted

      Hey Poppy,

      Oh I most definitely understand it's not easy to hold onto hope and stay positive when things just seem to stay the same or not improve much over time. Remember it's okay to let go and just remember there is a God and He is in control of everything and putting it in His hands, you can trust Him with it for sure. I know that sounds easy to say but I have trouble too with that trying to control things myself and find solutions myself, and it gets you weary Poppy I know - but remember there IS hope and absolutely you ARE going to recover from this - what has helped me is someone else believing it for me when I am struggling myself, I know that maybe sounds futile but just to know that I don't have to carry all the belief myself that someone else is supporting me with it means a lot when I don't feel I have the strength - so Poppy I absolutely 100% believe for you that you are going to make a full recovery, even if it's hard to see yourself right now.

      The tests I had done were just generally routine kind of blood tests, as well as checking for mono, things like full blood count, liver function tests, that kind of thing. If you are able to get a doctor that can do a range of blood tests that might be an idea and hopefully give you some reassurance, although for some reason it seems so hard to get from many doctors! I also had an ultrasound on a lymph node that was bothering me in my neck and they said it was just a reactive gland and just part of the mono and it went away with time.The rheumatologist just did some tests of my joints and reflexes, etc, hoping that you can get this appointment soon and the doctor is a helpful and blessed one and gives you encouragement and reassurance.

      You are going to get there Poppy, and have wonderful and happy and healthy times again with your family when you don't feel so unwell - just hang in there each day for now and trust that God will come through for you - I STRONGLY believe that He will.

      Craig

       

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    • Posted

      Still thinking about you Lob and rooting for you today, just a reminder to hang on in there - you are still young and DO have healthy and happy times to look forward to, God is going to take care of that so don't worry if you feel like you're run out of gas for now, He is going to pull you through Lob I still totally believe that.

      Remember just cope with each day as it comes and that there is a reason for everything - God is the master at turning a seemingly awful situation into something positive, it doesn't always make sense when going through it but He wants you well and never leaves you man.

      Hoping for a better day and remember distraction is good, trying to think about focus on other stuff if possible, I know it's easier said than done when feeling so unwell, give yourself some respite each day do something you enjoy and remember just getting through each day is an achievement when feeling unwell.

      Craig

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    • Posted

      No not really. The brain symptoms are much worse. Actually my body was quite alright the whole time, I just feel like extremely hangover all the time. Everything is hazy, my memory and visual imagination are non existent, distorted emotions and sense perception and noise/ light sensitivity. 
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