Extreme exhaustion?

Discussion in 'Fibromyalgia and ME & Chronic Fatigue Syndrome' started by seireiofhope, Apr 5, 2011.

  1. SBear

    SBear Member

    What is PEM, please? I found a list of 59 definitions on line but none of them seem to fit this context.
  2. hangininthere

    hangininthere Active Member

    PEM means the Post Exertional Malaise you get with Chronic Fatigue Syndrome.

    Patti
  3. mbofov

    mbofov Active Member

    PEM is "malaise", in actuality extreme exhaustion which hits generally the next day after often very minimal exertion. e.g., if I do more than 3 to 4 hours of light activity a day, the next day I will be bedridden. It used to take me at least 3 days of complete rest (could not do the dishes, take a shower etc.) to recover from PEM, and I do recover more quickly now, though my activity envelope has not increased to any significant degree - in other words, I'm still pretty much limited to 3 to 4 hours of light activity in order not to crash, or have PEM, the next day.

    The Fatigue Lab at the University of the Pacific in Stockton, California, was the first (I think) to devise a protocol which actually proves the existence of the PEM. They have people do an exercise stress test one day, and then another one the day after. People with CFS had unprecedented levels of disability the 2nd day, not seen in any other illness, and took much longer to recover from exercise. Actually, many were still getting worse on the second day (which used to happen to me).

    Here are some informative links:
    http://www.research1st.com/2012/07/21/pem-webinar/
    http://www.research1st.com/2011/11/18/pfl-testing/
    http://www.research1st.com/2010/02/03/the-hallmark-of-cfs/

    I think the most significant characteristic of PEM, which is peculiar to CFS, is that it occurs post-exertion. That may sound glaringly obvious such that it doesn't need to be stated, but I don't think it is that obvious to many people. If a person is anemic, or has low thyroid, or if their adrenals are exhausted, or have heart failure, or are deficient in B12 or folate, they will be tired ALL THE TIME, not just post-exertion. But with PEM, you can feel just fine (or as fine as is possible for you with CFS), and the bone-crushing exhaustion will not hit until many hours, often a day, after you exert yourself. It is a very strange phenomenon and is the most debilitating one (for me) with CFS.

    Mary
  4. Mikie

    Mikie Moderator

    First, let me say how sorry I am. I know the experience of being bedridden much of the time from extreme fatigue. These conditions can morph into other conditions or the symptoms can change. My rule of thumb is that any new symptom should be checked out by the doc with the understanding that there may be no definitive result from further testing. Our illness are maddening because they have no known cause nor no known cure. We can go through periods of feeling better only to sink back into feeling sick again. Or, we may pick up another condition.

    I have had my ups and downs for 13 years. Finally, I started the peptide injections, now known as amino acid solution injections, per the FDA. It has been a year since my last injection and I no longer have any symptoms of my CFIDS/ME, FMS, hypothyroid, nor Sjogren's Syndrome. I do not use the "C" word, cure. I only say my symptoms are no longer with me. I am not dancing a jig because I've been plagued with UTI's for more than 4 months and am exhausted from that. It is my belief that even when we no longer suffer the symptoms, we never get back to 100 percent, particularly if we've been ill a long time.

    My best advice is to find a very good doc, familiar with our conditions. Treat your worst symptom first. Know that this period of exhaustion doesn't mean your future is hopeless. Never, ever give up. Best of luck to you.

    Love, Mikie