No post-exertional malaise?

Discussion in 'Fibromyalgia Main Forum' started by bioman85, Mar 5, 2006.

  1. bioman85

    bioman85 New Member

    Hey all,

    When I read about chronic fatigue syndrome, post-exertional malaise almost always comes up as one of the defining symptoms of the disease. However, I don't believe I have ever had that.

    Mine was a sudden onset (last November), one night I went to bed fine and the next morning I woke up unbelievably exhausted, and it's only gotten worse from that day. However, I was still able to exercise vigorously when I first got sick, which did not worsen my fatigue, or improve it.

    Since then I have gotten progressively more fatigued, and I have not tried exercising for a while. But I do walk around frequently, and don't limit my physical activity. I have never experienced the post-exertional fatigue that I keep hearing about.

    If this is a hallmark symptom of CFS, then is it possible I don't have it? My doctors have ruled out everything else, so it seems that whatever is causing my chronic fatigue is different from others. Any thoughts?
  2. Rosiebud

    Rosiebud New Member

    post exertional malaise is the one thing that proves people have CFS.

    I have it severely, I 'pay' for everything I do, if not immediately after, then the next day and even up to 35 hours later.

    Read the Canadian guidelines they are excellent. address is www.mefmaction.net. They are by far the best guidelines on CFS.

    love
    Rosie
  3. bioman85

    bioman85 New Member

    How long after you got sick did you notice the post-exertional malaise? I honestly don't know what else it could be. I've had so many blood tests I can't remember. Brain MRI, ECG, EKG, thyroid tests...the FFC also ran their blood tests, and found low NK cell activity, which has been found in CFS patients as well. I was diagnosed with hypthyroidism because of my T3:Reverse T3 ratio being too low. I don't know what else it could possibly be?

    chris[This Message was Edited on 03/05/2006]
  4. Bunchy

    Bunchy New Member

    I supposedly have "atypical ME" Everything else has been excluded yet I am dreadfully ill and have been for many years. I have had many many weird symptoms (many of which I have never heard of in any illness let alone CFS) and different phases to my illness but when it first started, it was mainly fatigue in my head and also, like you, neither improved nor made worse by exercise also swollen glands and just a general very ill achy feeling.

    Also since my illness has started to affect me more severely over the years, I get a post-exertional reaction but it is more severe stiffness, pain in back and upper legs and ill, yucky feeling rather than energy loss.

    I would be happy to talk further with you about this but as others have said, you MUST be thoroughly checked out before you give up (like I have) on an alternative diagnosis.

    Hugs Bunchy x
  5. Michelle_NZ

    Michelle_NZ New Member

    I believe you can still have CFS and not have post exertional malaise. I have had CFS for 2.5 years. This time last year I was walking about an hour a day - and I mean really charging - walking like a maniac. I had no problems at all. I still experienced other CFS symptoms though. Now I am completely unable to do any exercise at all.

    In fact, if I doing normal things like shopping etc, it can cause fatigue relapse that can last up to a week. I have also found I have to be careful when having sex - it cant be too vigourous, even if I'm only out of breath for a few minutes, it can cause me to have a week of being bedridden (and not in a good way!) Hope this helps.
  6. bioman85

    bioman85 New Member

    Thanks for writing your opinions. I've been going for tests to determine the cause of my fatigue for over a year. I've been tested for mono, MS, Lupus, thyroid, had 2 sleep studies, in addition to the FFC blood tests.

    From my sleep study I learned that I don't have sleep apnea, but I do have alpha wave intrusion into my delta sleep. I am trying to get my sleep doctor to try Xyrem on me, and see how I respond to that.

    The FFC found high CMV antibodies (I had CMV as an infant), mycoplasma pneumonia and chlamydia pneumonia. I finished a 2 month course of Zithro for the bacterial infections, and just started Amantidine for the CMV.

    The doctor there also diagnosed low thyroid based on my T3:Reverse T3 ratio being low, and I've recently started on thyroid supplementation (37.5 mcg) and am ramping up to 50 mcg.

    My PCP believes the fatigue is caused by the alpha wave intrusion as shown in the sleep study, and that the is the avenue I am exploring next. I do know that alpha intrusion can appear in healthy subjects as well who do not complain of daytime fatigue. Another interesting note from my sleep study was that I had "a sufficient amount of deep sleep" so that questions why the alpha intrusion would cause me to be fatigued.

    Thanks for all of your comments, and good health to you all.

    Chris