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Newly Diagnosed

Posted , 7 users are following.

mandyJ74
mandyJ74

Please help. I was diagnosed with CFS a few weeks ago. I knew that something wasn't right for a while and couldn't quite get to the bottom of it. After numerous tests my GP diagnosed me with CFS. I am finding it really hard to manage at the moment and have had to take some sick leave from work. Can anyone offer me some advice on how to manage the condition ??

At the moment I'm not sleeping very well but I'm extremely tired. I feel like someone has sucked away all my energy and tied lead weights to my legs, I feel sick a let of the time and some days can't I can't get my words out properly. I have always been very active at was always on the go, I just want to be me again 😳

1 like, 7 replies

7 Replies

  • jackie00198
    jackie00198 mandyJ74

    Posted

    So sorry you're having to deal with this illness. The best advice I can give you is to get plenty of rest and pace yourself. Don't try to push through the fatigue because it can make you worse. Also, it can result in a push/crash cycle. Eat healthfully and do your best to remain calm and not stressed. People can recover from ME/CFS, especially in the first 3 or so years. Like you, I was very active before getting ill. I had a lot of frustration and resentment about getting the illness. That's understandable, but it sure didn't help matters. By the way, cognitive issues like not getting your words out properly are very common with ME/CFS. I have short-term memory loss and sometimes get letters mixed up when I write. This is especially ironic since I was a technical editor for many years. Best of luck to you.
  • wknight
    wknight mandyJ74

    Posted

    I am on the road to recovery after suffering for many years and my success has been down to pacing, learning to say No and a FitBit.

    Everyone told me to pace and I ignored them. When I did it seriously I eventually started to see a light at the end of the tunnel. Been 2 years now and I cycled 30 miles this year.

    No means not doing things. Stop pushing yourself and say no it can wait.

    My fitbit records my steps which is nice, but the big help for me has been to monitor my sleep. It allows be to see how much I sleep and I can relate that back to activity and identify the days when I did too much.

    Best of luck

  • sylvia17461
    sylvia17461 mandyJ74

    Posted

    Hi Mandy , sounds like a thyroid problem even if your blood tests have come back normal they are renowned for being unreliable !! As CFS is a diagnosis of elimination hypothyroidism will have been dismissed even tho all your symptoms point to it !! Doctors stick rigidly to TSH andT4 blood tests and rarely do  free T3 or antibodies tests even if your GP has asked for them the labs rarely will do them . My advice ask for a trial of thyroid replacement hormone  . Hope this helps . Of course I could be completely wrong but what have you got to lose CFS leaves you with no light at the end of the tunnel and symptoms are very much the same . Sy
  • jeanp
    jeanp mandyJ74

    Posted

    Hi Mandy, so sorry you are having to cope with this. I know the lead weights feeling - I think of it as someone ramping up the gravity while I wasn't looking!

    I have only recently bee diagnosed, but have had CFS for a couple of years. Now I have an actual diagnosis it gives me more power to go to my employers and ask for adjustments at work. I have dropped down to four days a week from five, with a day off mid week. This has helped quite a lot, though I still get very tired.

    Other things which have helped: getting enough sleep, usng herbal sleep remedies, qi gong, and meditation to relax before bed. And my doctor referred me to a mindfulness course locally, whch had gven me some techniques to defuse some of the tension and stress which I was getting at work, and allowed me to stand back a lttle from problems.

    Good luck with your recovery - let us know how it goes.

    Jean

     

    • mandyJ74
      mandyJ74 jeanp

      Posted

      Hi Jean.  It's so nice to speak to someone who knows how u feel.  I also have a diagnosis now and have recently attended a group at a local hospital.

      I downloaded a meditation app yesterday, I did use this last night on going to bed.  I felt that it really helped me to relax.  I am at the moment trying to battle through the tiredness, I need to stop doing this to enable me to recover.

      Thank you for you advice xx

  • andrew_08416
    andrew_08416 mandyJ74

    Posted

    Hi Mandy 

    there is a lot of good advise here and this is a particularly useful group with many a friendly comment.   

    I know what your saying about the heavy weight feeling, the muscle pains arent much fun either.  But out of interest do you also have the same felling in other muscle groups?  For me its my arms and my legs which are effected the most. 

    On days where there is little to low pain, I feel the weight more. Arms are heavy even when sitting at my desk. trying to explain it myself I often say its like the aftermath of a heavy workout down the gym without actually going down the gym.   But I like the gravity switch description better.  I'm going to poach that, if you dont mind.  I also often say that Grimlines have stollen my energy levels and if anyone can find them to please tell them that I'd like them back. :-) 

    hopefully your feel better soon.  

    quick note on the relaxation music.  I also do that, another thing I found relaxing was digging out old CD's from summer periods full of fond memories.  Playing historical personal life soundtracks back to yourself is somehow uplifting.  Another thing I have is sented aromatherapy candles - for a straight guy I am not ashamed to say it but ... I love my candles.  

    I hope you feel better soon 

    regards

    Andy

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