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CFS described as lack of energy instead of tiredness?

Posted , 9 users are following.

LaszloLH
LaszloLH

I was just wonerding if others noticed a limited amount of energy availabe after resting, instead of calling it tired, I am calling it lack of energy.

Many may not understand this small difference, but I was wondering if anyone does.

1 like, 97 replies

97 Replies

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  • LaszloLH
    LaszloLH

    Posted

    there is one long post waiting for moderation.... I put a link into it.
  • jeanp
    jeanp LaszloLH

    Posted

    Hi Laszlo

    If they ask how I am, I tend to tell people that my energy levels are low or very low. If I say I am tired, I think people relate to the word tired differently, and think that it is just like ordinary tiredness and I just need a short rest. ("Everyone gets tired" is one comment I have come upon more than once).

  • Elmo69
    Elmo69 LaszloLH

    Posted

    I definitely understand the difference! I have just had diagnosis of "CFS/ME" confirmed last week, although this label comes nowhere near covering how I feel!

    • LaszloLH
      LaszloLH Elmo69

      Posted

      Hi Elmo,

      Confirmed? What is that entails? I told the doctor what I had and he just agreed looking at that chart I have the link to above.

    • Elmo69
      Elmo69 LaszloLH

      Posted

      Following my third "breakdown" in October last year (having had first in 2013 and another in 2014) and knowing it was not due to my depression because I actually wanted to continue but my mind and body were just not functioning at all, I asked my GP if it was possible I might have CFS/ME? She told me of a relatively new service specialising in CFS/ME in my area and referred me.

      I'd had numerous blood tests over the past few years in response to lots of different physical symptoms which were all normal. My GP repeated these blood tests plus some additional ones as per the referral guidelines which were all again normal then I had to complete a questionnaire about the impact of my symptoms on my life (mostly graded response replies e.g. on a scale of 1 to 5 how often do you feel well). This was completed 2wks before appt and posted back and formed the basis of my appt last week. First part of appt was with a physio and OT and second part was with a psychologist and psychotherapist who then all met together later in the day to discuss my case and they reached conclusion that all other possible diagnoses have been excluded therefore they "confirm" that I have CFS/ME.

      I have another appt with the psychotherapist next week to discuss my management plan and agree which "treatments" might be useful for me to try.

    • lynne69494
      lynne69494 Elmo69

      Posted

      Wow sounds like youve  really good responses and services, so many involved trying to help you, even getting a joint case conference, my gps dont do anything  like that, its standard blood tests, maybe a scan, and maybe youve got it, cfs fibro, push for rheumatologist, maybe a clinic but long distance away, Where are you, uk, which area, or usa, Anyway l hope you get the answers and help with it. 
    • Elmo69
      Elmo69 lynne69494

      Posted

      Hi, sorry not responded sooner!

      I am in UK, Bedfordshire. The CFS/ME Service started in 2013 and is growing!

      Saw psychotherapist this week and have been given lots of information and the services booklet about "Understanding and Managing Your Fatigue" which has helpful parts for me to complete and forms the basis of my care plan.

      I feel I will greatly benefit from CBT and luckily the waiting list for this is short. I may need some physio sessions to help get me moving properly again but I understand much better the principles of GET which I hated the thought of in initial reading!

      Yes, I believe I am very lucky to live in this area with this modern service available. All the staff currently involved and part of the team are so committed to helping their patients and very much want to gain more awareness of both their service and CFS/ME generally.

      Hope you too are managing, despite not having the same services available. :-)

    • lynne69494
      lynne69494 Elmo69

      Posted

      HI, Good that youve a great service locally, it helps, and for them to be interested and learn more themselves is a bonus. l,m really wilted myself at present, thought l was doing well earlier in the day, for a nice change, now gone,  Best wishes 
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