CFS - without F - is it possible?

Discussion in 'Fibromyalgia Main Forum' started by Brownie08, Nov 21, 2008.

  1. Brownie08

    Brownie08 New Member

    My Dr keep telling me that I do not have CFS because I am not complaining of extreme fatigue, yet I have all the other symptoms. Dont get me wrong, I am tired - but not bed ridden. Overall, my energy is ok - just tired of not feeling well...

    Does this make sense?
  2. binxi

    binxi New Member

    i don't feel overly fatigued either, but constantly feel sick. i think that maybe some of the fatigue is masked by the other symptoms anyway- like, when you feel sick all you want to do is rest anyway, so is that the same as fatigue?
    for me its different to normal tiredness anyway, like my body feels all heavy but its not like i'm yawning and falling asleep all the time. there are different degrees of it too- most people aren't bed ridden.
    have you checked the thread for other diagnoses to consider? i think it possibly still could be cfs, but theres a whole heap of other stuff it could be too. one of the major signs of cfs seems to be feeling really bad 12-48 hours or so after physical exertion.
  3. Brownie08

    Brownie08 New Member

    Constantly feeling sick is what I have - as if I am coming down with the flu~
    I have had four months of Dr after Dr. None of which are coming up with anything.
    I am so frustrated...

    But what I am seeing is that I relate to many on the board. I am fairly certain it is either FMS or CFS - My GP said they need at least 6 months of testing before they will go to the CFS diagnosis. Lovely!
  4. Rafiki

    Rafiki New Member

    is a word used by those who do not have ME to describe our symptoms and is often used to trivialize them.

    Chronic Malaise Syndrome would be more accurate. It's not really much better, though. We have a complex illness with symptoms which are consistent and occur with great predictability among our population.

    I don't know if what you have is ME and no-one really knows what CFS is but many people with ME are labeled with CFS. So are people with other conditions which cause fatigue and just about all states of poor health or low mood will cause "fatigue" or something like "fatigue".

    If you do some research on the scandalous history of the CDC and this awful name you may have more clarity about your own situation. There's plenty of stuff right here on this site. I also recommend the book OSLER'S WEB which is an absolutely riveting history of ME in recent times.

    I wish there were a more simple answer.

    Peace to you,

    [This Message was Edited on 11/22/2008]
  5. binxi

    binxi New Member

    its so familiar.
    for me i' d had all the tests done and stuff and i was pretty much informally diagnosed with me/cfs but told its not official until 6 months. apparently before 6 months its just cf without the s, but i'd be embarrassed to tell people i had cf! its all just dumb labels really, but you need the label for medical forms for sickness allowances and stuff if nothing else.
    the way i see it, the most important thing is to rule out the nasties- lymphoma etc. check out the other diagnoses on the thread on here or check
    as i've said, if you get worse a day or 2 after exersion its very likely that you have cfs/me, especially if it all kicked off with a virus.
    no matter what- try to keep your chin up, i've been sick for 12 months and have been making massive improvements. just rest when you need to and don't feel guilty about it. keep life simple.
  6. I was one of those typical teenage, post-glandular fever cases, and for quite a while I was knackered all the time. What was worse for me though was the muscle weakness, muscle fatigue, pain and mental fogginess. I had a great deal of discomfort for quite some time and needless to say this has been with me for seven years now.

    Nowadays I don't get tired so much unless I have a cold or something; however I suffer from some kind of 'loose muscle', almost like mild hypotonia. Along with this my muscles become fatigued easily, I get these strange 'numbing' headaches, following heavy lifting especially -I've been unable to build muscle-, twitching and general feelings of weakness and discomfort. I experience also mental fogginess, parts of my brain appear to switch off at times eg: my sense of rhythm comes and goes, word finding difficulties, difficulty socialising, some anxiety -this may or may not be related- some sexual dysfunction, yet because I'm not 'tired all the time' I've been told that I've probably HAD CFS. The psychiatrist I saw acknowledged the symptoms yet doesn't consider them related, even though they started at the same time.

    My basic point is, yes, I can really sympathise with what you're saying and the frustration it causes. I don't know your case history, but considering my own I think the medical profession is focusing way to much on what particular symptom.

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