Phoenix Rising tells QMUL: release the PACE trial data
Mark Berry, Acting CEO of Phoenix Rising, presents the Board of Directors’ open letter to Queen Mary University of London (QMUL) urging them to release the PACE trial data, and hopes that other non-UK organisations will join British charities in the same request...
Discuss the article on the Forums.

How long after ME/CFS onset did you start getting PEM ?

Discussion in 'Post-Exertional Malaise, Fatigue, and Crashes' started by beaverfury, Jan 10, 2015.

  1. beaverfury

    beaverfury beaverfury

    Messages:
    503
    Likes:
    558
    West Australia
    I was not aware of any physical PEM until several months after the viral onset of my ME/CFS.

    To be sure, I wasn't doing much to bring on PEM as I didn't have the energy to get out there exercising.
    But from memory it became a bigger issue as time went on. (The first year has become a blur now)

    What are other peoples experiences of the duration of time between ME/CFS onset and their first awareness of onset of PEM?
     
  2. Sushi

    Sushi Senior Member Albuquerque

    Messages:
    14,328
    Likes:
    21,475
    Albuquerque
    For me it was many years as I had a gradual onset.

    Sushi
     
    SDSue likes this.
  3. Dufresne

    Dufresne almost there...

    Messages:
    873
    Likes:
    1,125
    Montreal
    Mine was a gradual onset and I didn't have PEM for many years.

    In an effort to somewhat understand PEM I've often wondered if those with acute onsets had this symptom show up right away.
     
    Sherlock likes this.
  4. Sherlock

    Sherlock tart cherry etc. for joints, insomnia

    Messages:
    1,229
    Likes:
    679
    Czechosherlockia, USA
    One month or so. Gone now.
     
  5. ukxmrv

    ukxmrv Senior Member

    Messages:
    4,324
    Likes:
    4,359
    London
    Mine was an acute viral onset and yes it was straight away. I never thought of it as PEM as I did not connect the increase in symptoms to exertion for a while. The viral symptoms from the first acute attack just kept coming back so there was no long free time to see a straight cause and effect. I would come up for "air" briefly and try to act normal and then suddenly it would go back to a high fever, being delirious and with sore glands all over and tonsillitis.

    There was also POTs (which I didn't know about at the time) which set in straight away as well. I remember my first shower and fainting.

    It was too long ago now for me to remember when I tried to do physical things after the onset that were more than "just" bathing ,brushing my hair or preparing a simple meal. I do remember my first time to walk around a supermarket or play a bit of tennis or ride a horse. The resulting severe and long pain, weakness and sore throats/glands/tonillitis/fever etc told me something was badly wrong.

    I was too weak to drive the car and had to get my then boyfriend to come and get me. Had to pull over and ask passerby's for help. Some children took me to their home. That put me back for weeks.
     
    Last edited: Jan 10, 2015
  6. halcyon

    halcyon Senior Member

    Messages:
    2,292
    Likes:
    5,365
    Acute viral onset here as well and I believe the PEM started more or less right after. Unfortunately I had no idea what PEM was at the time so I spent a few months making myself worse before I realized what was going on.
     
  7. Forbin

    Forbin Senior Member

    Messages:
    951
    Likes:
    3,988
    I had sudden onset in the wake of a severe infection (probably influenza). My symptoms got worse and worse over the course of several months and plateaued at a fairly severe level. I felt pretty horrible all of the time, so it would have been very difficult to link any activity to a worsening of symptoms 24 hours later. However, when the intensity of my symptoms decreased somewhat years later, that's when I first noticed PEM.

    I probably first recognized it about 5 years after onset. I remember describing it to a friend when he said that I looked OK while attending an event. I told him I would feel a lot worse tomorrow. At the time, I wondered if that made the illness sound even more incredible to him. I mean, who ever heard of mild activity wiping you out 24 hours later? That was more than 25 years ago. It would be decades before I even heard of the term PEM and learned that others with "CFS" had it..
     
    Marky90 likes this.
  8. Little Bluestem

    Little Bluestem All Good Things Must Come to an End

    Messages:
    4,665
    Likes:
    5,479
    I had acute viral onset. I spent the first 5 months almost recovering. If I had PEM then, I just considered it part of the illness. A few months after declaring myself recovered, I realized that I wasn't because I would get tired from a fairly minor activity and then continue to get more exhausted after I stopped. It took two nights' sleep to recover. I would not hear of PEM for a couple of decades.
     
  9. Woolie

    Woolie Senior Member

    Messages:
    1,930
    Likes:
    14,556
    I had an acute onset. Hard to tell if I had PEM in the first 3-4 years, as I had a lot of fever and flu-like malaise, so didn't attempt much exercise. In the 6 or so years following, I had intermittent periods where I could do most everything (no PEM), and others when I knew I couldn't without complications. Recently, all this has flattened out a bit, so I have to limit myself even at the best of times.

    Having this sort of of intermittent flu-like variant of MECFS often makes it hard to tell cause and effect. I almost envy those who can work out exactly what activities they can do to avoid a crash. And they seem to know exactly when a treatment works or doesn't. I have no stable baseline from which to work this out. Does anyone else have this problem?
     

See more popular forum discussions.

Share This Page