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need a little input

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stephanie78397
stephanie78397

Just recently diagnosed with CFS. I've been dealing with fatigue for over 10 yrs now. I always thought I was anemic or it was because of low blood sugars wich of course never showed up in tests. I thought maybe i had a gas leak or something in my house that was causing me to be so tired....beyond tired. I've always went to the gym and work but those were the only 2 things I had energy for. Endless tests and there wasn't anything wrong with me. This past year it got worse. I thought maybe I had narcolepsy. I was so tired I didn't even feel human anymore. But a trip to the sleep Dr proved otherwise. Long story short I am now on adderall and told I have CFS. I just started the drug so I'm on a low dose right now it seems to work for a few hours. Its an emotional roller coaster to wake up feeling bad then feel normal a couple hrs later after popping a pill. I was told they don't know what the cause is, which is a real bummer. I thought Ide have an answer. I am still able to make it to the gym a couple times a week and work. I guess my question is how this illness makes you feel. I can wake up and feel horrible like I have the flu without the vomiting or diarrhea... Just that heavy exhausted feeling. Can't see straight like I'm in somebody else's body. Then for an hour or two feel like a normal person and wonder if I'm crazy. I always look exhausted no matter how much I sleep. I'm a pretty strong willed person and I've been working like this because I have to. I have to have a job. This is long but I feel alone in all this. I feel like there is something wrong and they just threw a label on me because they don't know what's wrong. Another question I have is I was septic around 17 yrs ago. I almost died, in ICU. Could this have effected me somehow all these years later?

0 likes, 10 replies

10 Replies

  • susan556
    susan556 stephanie78397

    Posted

    Hi Stephanie

    Oh how i feel for you having been diagnosed with this approx 19 years ago, Reading what youve put hear is like reading about myself, Yes wake up with aching legs, feels like your going down with the flu, can have a spell when you think its going only to return again, come over me like waves,makes me feel so unwell and lethargic.   Good you say your pretty strong willed and i think a positive strong mental outlook is nessessary. Generally when all other things have been ruled out and blood tests come back showing nothing  and i presume your dr had done this? then its M.E. /CFS thats diagnosed.    I think if it was that you was septic around 17 years ago and this was the cause of your problem it wouldnt have waited for 7 years but who knows, some things can go around in our bodys and come out years later so it might well be possible. In many cases it follows a virus of some kind. For some strange reason i always feel worse from March to April every year..    Must be very hard for you trying to hold down a job as well..

    Another possibility is candida which feels very much like M.E.  or CFS  look it up on google, you can help by keeping of sugar and caffein, Sugar damages  our immune system badly.

    Well im off to bed now, will no doubt wake up feeling groggy and aching legs but will prod on regardless. poor you having to wortk feeling like this.

    Sue x  

    • stephanie78397
      stephanie78397 susan556

      Posted

      Thank you for your response. Are you able to work? Ive had everything tested for everything I think. I just feel like there should be an answer. I gave up coffee a month ago and I don't drink pop. I've added more fruits and veggies and I only eat sugar once a week. Can you yell me more about candida?. Hope all is well and thank you.

  • wknight
    wknight stephanie78397

    Posted

    Your story sounds a bit like how I have felt.

    my advice is stop looking backwards and trying to work out if it was something in the past and look forwards.

    i battled it for 8 yrs before I followed my gp advice and started pacing. It's been along journey and I still have the odd days when I feel tired and spend the day in bed, but most of the time I now lead a normal life, but am always monitoring my activity levels.

    pacing worked for me 

    • wknight
      wknight stephanie78397

      Posted

      Pacing is learning how tp pace your body. Its akin to learning how to run a marathon. First you find out how much activity you can do without causing any adverse affect. Once you know that baseline its a slow progress from there. 

      It involves a lot of saying NO and trial and error. I started with a lot of resting and little activity and then built up from there. lots written on the subject

    • stephanie78397
      stephanie78397 wknight

      Posted

      Well that makes sense. Are you able to do more things now? i just ccan'tget the idea out of my head that they have missed something in the testings. Maybe I should just give up on all that. Its just everyone seems to expect so much out of me and they don't understand.

    • wknight
      wknight stephanie78397

      Posted

      Yes I can now ride 50mile, before I spent most time in bed.

      people won't understand, just say you are ill, and learn to say no I can't do that. Very difficult. 

      You have to teach your body to work again. It's slow, but it works. There is no magic potion with this, no tablet and you will feel better. I would start looking forward and taking each day 1 step at a time. 

  • jannette10
    jannette10 stephanie78397

    Posted

    hi stephanie

    Me too going through all these symptoms

    but you sound so young - me not so -but I think this is not an

    age related problem

    I never could put into words until i read your message - about being in someone elses body

    why do we feel like this -i feel like something has taken over me

    and like you - what the hell is sleep - i thought i was supposed to wake up refreshed and face the day - but no way i just want to go back to sleep and

    hen when i wake up i look like the walking dead!

    cant eat much so tired

    Please explain what septic means - being in ICU - must be serious

    keep in touch

    xx

    • stephanie78397
      stephanie78397 jannette10

      Posted

      Thanks for the response. I had infection that went that went into my blood stream. It was horrible because I was going to the drs and no antibiotics they gave me would work. But I'm sure that was so long ago it doesn't affect me now. I'm just searching for an answer like we all are I suppose. So you can sleep and still look like walking death? I was going to ask my Dr about that because from what I've read most people look "normal"...lol. Howlong have you been dealing with this and is there anything you've done that seems to make any differences in how you feel?

    • jannette10
      jannette10 stephanie78397

      Posted

      hi stephanie

      I am a lot older than you - you sound young

      but I have had this for years and yes i have done things - but do they make a difference - I have to be honest

      One day OK I FEEL GREAT - next day & day after I feel awful -

      How much sleep can I do?

      But i pace myself - maybe 2/3 hours i am knackered

      then maybe 30 mins of good time

      What i dont do is worry - i listen to my old body and just do what i can

      Works for me but maybe not you - but try - I never eat big meals - I space my eating every 2 hours and just eat little of what I like - especially Dime bars - but cereal,pasta tubs, toast anything you want but does it help?

      sometimes but this is one condition that we have to try and find a way to cope

      PS I always - tired or not -got to bed at the same time every night and if I cant sleep just put my music on

      just try - this is awful stuff we go through

      thinking of you x

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