A little update

Posted , 4 users are following.

So I know I have recently joined this community but I thought it would be nice to give an update about myself so we can all learn from each other about our experiences. If you read my previous post I was diagnosed with chronic mono around two weeks ago. I was very upset and worried but overcame that knowing I will someday get over it. A few days ago I went to the doctor and got a referral to an infectious disease doctor. Come to find out this doctor wrote research papers on EBV which gives me peace of mind that he will be my doctor and knows what he is doing as he has been there 28+ years. As I put in my previous post I was suffering from anxiety and depression from the mono. However I found some interesting ways to overcome this anxiety and have only had minor anxiety. I suggest if you are experiencing any anxiety to get outdoors no matter what. Just being outdoors maybe moving around a little and talking to family has relieved my symptoms to a manageable level. I also recently have been trying to get back into an exercise routine (5 minutes of light walking compared to usually an hour of exercise seems little) but I can tell the pull on your body when you exercise with mono so I have been taking it slow. Hopefully this specialist I will see have some suggestions/answers. Currently the main symptoms I have been having is a feeling of something on my chest or pressure in my stomach area and it feels difficult to breathe but I know and all doctors have said my lines are perfect, a little blurred vision (which is a little scary to me) fatigue, my eyes feel heavy and weak, and other weird and unexplained feelings and sensations. I am a little worried about the blurred vision any information on this would be helpful.

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  • Posted

    you can go to many drs i went to 7 but there is no cure and its hell . also for the folk that live alone with 'no family ' around its very very tough .

    started ozone blood therapy today you may want to look into it .... this thing lasts months ... years and its hell physically and mentally . praying this treatment works and new dr also told me i shouldnt have stopped working out ! oxygen is good !

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    • Posted

      Good luck with the therapy Lori, you are in my thoughts at this time with this and just remember to listen to your body and not do any exercise which is too much for you at this time - just walking can get the blood and oxygen flowing very well indeed!

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    • Posted

      yes the dr said 'why did you stop working out ?'

      its oxygen that we need. it makes sense as felt worse since stopping . i was dizzy when i first started running but it would wear off ... could kick myself .. should have never stopped!

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    • Posted

      I think it's about finding the right balance if you can Lori, definitely would urge you not to jump into lots of exercise or workouts right away especially with how tough things have been this last while. It might be a gradual process over an extended period and it maybe just starts with trying the walking again, but just be careful and take things slowly that's really important.

      Hoping you can get a better sleep over the weekend, that was a big step you took with the first session of the ozone therapy but you did it Lori and praying that God blesses this treatment and the outcome of it for you.

      Craig

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  • Posted

    Hey G,

    Definitely some real words of wisdom there thank you for those! I know that getting out for a short walk each day helped me a lot during recovery from this virus, it wasn't always easy to do that but just getting that fresh air, even for a 10 minute walk or as much as you feel you are able to, can really help. And just listen to your body, some days that might be easier than others. Still do things that you enjoy that don't involve lots of stress or exertion - it can even be small things like watching fav films / tv shows, having baths, reading, listening to relaxation / healing verse videos online. It's important still to see / talk to friends / family during this, to have those I trusted and valued near to me and supportive during the time I had the virus helped me so much and I was and am very fortunate.

    I absolutely agree with your assertion that you will get over this G. Mono is a nasty nasty virus and the vast majority of people make a full recovery, but often it takes an extended period of time and in my case and many many cases the first year can be a horrible one, sometimes it's not until into that second year that you see a real turning point or difference and some doctors don't see to realise or recognise this. They don't seem to get it that because you haven't recovered within a few months they try to pass it off as chronic when absolutely in almost all cases this is not the case - the post viral effects of this can be so intense and severe and knock you completely for six, and it takes time for your body to rebuild and get its strength and resilience back - but absolutely it does and will come, and I am truly believing that God is the great healer and that you are going to be fully well again G - hang in there and thinking about you.

    Hoping very much that all these symptoms settle down soon, it is only natural that the blurred vision would be frightening. I have read some others on the site here (who went on to recovery fully) talk about blurred vision as a symptom, hoping others with experience of that can share their experiences and offer some good advice / reassurance regarding this. Glad that the new doctor you have is well researched and experienced on EBV and hoping he can really offer encouragement and support. Don't hesitate to seek the doctor any time you have concerns or want to discuss anything, no matter how often that is. Often I have found going to the doctor with a family member (my Mum) often was a great help when feeling very fragile myself.

    Thinking about you and let us know how you are doing over the next while - and remember you ARE going to get through this and be well again, I believe that in my heart of hearts for you.

    Craig

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  • Posted

    Update: After visiting the infections disease doctor I am grateful for the time he spent examining me and answering my questions. He told me that my mono was really from a previous infection and that my doctor had been telling me wrong. After doing some physical examinations he said that I have a nervous system problem like POTS syndrome. While his physical examination and my symptoms would convince him and or anyone of me having this condition I am frustrated knowing that I have mono and because it’s so complicated and doctors don’t understand it last more than 2 weeks. I am thinking of going to another specialist but currently have to accept this is not mono.

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