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I've had PVFS for 6 months and I just wanted to say although I am very unwell I still have lots of reasons to be positive and believe I can get significantly better. I've not even tried to get well since the beginning as my mind has been all over the place, did anyone else get like this ? With the paranoia, thinking you have cancer etc. ? The time the NHS rules out everything else for me has taken 6 months.

So I consider myself disabled at 34 years old having been an athlete beforehand, depressing yes but I am not one to quit easy. People do recover from CFS.

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  • Posted

    I agree with you David and I know people personally who have done it...its a tangled web to unweave but i believe its possible..or at least getting to a point of managing it well.

    Your right about the worry, i too have thought I had cancer due to enlarged lymphs (still not sure about this even after negative biopsy) MS, allsorts...i think that can happen when the symptoms can be so bizarre and bewildering, with noone to help or guide you, it leaves you googling or imagining the worst.

    I am positive too - i think you have to be, about getting better, maybe not 100% but at least 80 - 90 would be nice. I don't consider myself disabled, yet, but i think thats more because pyschologically i can't get my head around that concept! 

    Keep us updated with the journey and hopefully inspire others to do the same and take the same positive outlook smile

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    • Posted


      Yeah my dad tells me i've had every disease known to man. LOL

      You have to laugh at this dis-ease to beat it !!!

      Laughter is the best medicine ?

      Thanks Jacquie. Got the swollen groin lymph nodes too, just a little bit.

      Been tested for aids, lupus, myastenia gravis, leukemia, myeloma and lyme disease, although those results are not back yet so who knows as i was triathloning in the Highlands August. But i see a pattern over the months where any day i do too much i suffer the next. I am determined to get back to my pre-sickness levels of health, in fact to exceed them. I know i will be a stronger person for this experience. In many ways i am excited at the prospect of recovery with this experience having happened, how much more i will appreciate the small things in life. We often take our health for granted, i see this more now than i ever did. Always good to know that people recover from CFS all the time.

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    • Posted

      Well done David being positive is what gets me through the day !! But you also must remember NOT to give yourself a hard time if it takes a little longer than you expect , it will take as long as it takes every days different & the main thing is there IS LIFE WITH C.F.S !!! 

      Take care xx

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    • Posted

      Thanks Dawn. Managed a 70 minute walk to the grocery store. Tired yes, but mentally satisfied yes and i think that is so important for me and recovery in general. I do not think i am going to get well lying around all day.
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    • Posted

      I think going for short walks has helped me to keep my energy level up. I also take vit.D every day and a multi vitamin. 

       I did have my cfs go into remission for almost a year. I have relapsed again and am so tired of being tired.  I also have to deal with IBS this last week. Looking forward to another remission.

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