Lipkin's Monster ME/CFS Study: Microbes, Immunity & Big Data
The Microbe Discovery Project outlines an ambitious new study by top researchers that has collected patient samples, but needs desperately funds to complete the work.
Discuss the article on the Forums.

After 3 years with cfs able to exercise and feel energised - what next?

Discussion in 'General ME/CFS Discussion' started by quent100, Feb 12, 2018.

  1. quent100

    quent100

    Messages:
    3
    Likes:
    7
    So about 4 years ago I became unwell (stomach infection picked up on diving holiday) - I was 34 and a healthy, exercise loving guy.

    My first year of CFS I spent 11-12 hours sleeping a night, would barely make it through a working week (had to take a month off at one point) and was just exhausted continuously.

    From there I've slowly (painfully slowly) improved - to the point where 6 months ago I tried for the first time in 3 years to go for short run. It was only 3 miles (I say only as pre-cfs I was running marathons) and I walked a good portion of it - but the key difference was that at the end I didn't feel exhausted - but actually re-energised. I've since started running once a week - with improving fitness.

    I'd really love to hear from anyone else who has found themselves at a point where exercise actually revitalises - and where they've gone from there? (is this potentially an indication of a path to recovery?)

    As a classic symptom of cfs is post-exertional malaise does this mean that technically I no longer have cfs? I certainly feel like I have cfs - my cognitive difficulties continue and some weeks my energy is very low- definitely don't think as clearly as I used to.
     
    Last edited by a moderator: Feb 12, 2018
    echobravo, Sushi, ljimbo423 and 3 others like this.
  2. Marky90

    Marky90 Science breeds knowledge, opinion breeds ignorance

    Messages:
    1,235
    Likes:
    4,581
    That sounds very promising!

    For me it has been consistent that, when i thought i was better, and tried to exercise - i never felt re-energised. I would know i`m recovered/better when that changes! If youre not getting any in increase in symptoms after or during exercise, it seems u could gradually continue as u see fit? :)

    Good luck
     
    Sushi, Learner1 and andyguitar like this.
  3. Learner1

    Learner1 Forum Support Assistant

    Messages:
    2,268
    Likes:
    3,880
    Pacific Northwest
    I have been carefully exercising throughout this illness. I can't say I feel energized afterwards, though I'm able to do more than I was. But it varies a lot from day to day.

    I've had a lot of treatment to kill infections, and support my immune system, endocrine system, nutrient needs, and mitochondrial function, so I'm hopeful that solving these problems will lead to wellness.

    However, I've seen enough stories of relapses to be wary. I'd suspect adding stressors of various kinds can lead to the proverbial straw that breaks the camel's back.

    The fact that you still have symptoms might mean that there's still work to be done, and prudently exercising to avoid overdoing it might be wise.

    On the other hand, lucky you to have made it this far! You must be doing something right!
     
  4. *GG*

    *GG* senior member

    Messages:
    6,246
    Likes:
    4,894
    Concord, NH
    I exercise, but it does not revitalize me. Increases my pain and fatigue etc..But I think I would go insane if I could not do that, it's a double edged sword, but something I am willing to continue doing at this time.

    I have pretty much exercised the 14 years I have been ill.

    GG
     
    Sushi likes this.
  5. ljimbo423

    ljimbo423 Senior Member

    Messages:
    896
    Likes:
    1,612
    United States, New Hampshire
    @quent100 - Have you done anything to treat your CFS?
     
  6. Wishful

    Wishful Senior Member

    Messages:
    530
    Likes:
    762
    One definition of ME/CFS is that PEM is a symptom of ME but not of CFS. Feeling revitalized after exercise might not be meaningful regarding the disease. Did you not have PEM 24 hrs (or whatever your personal delay time was) afterwards? Did you have PEM after exercise before this recent improvement?

    I can't remember exercise making me feel energized.
     
    *GG* and Sushi like this.
  7. Butydoc

    Butydoc President

    Messages:
    716
    Likes:
    2,136
    I would be extremely careful with your exercise. I felt like I was mostly recovered and started my martial arts work outs figuring I was in remission, that lead to a crash and subsequently I never recovered. If you are still symptomatic, I suspect you are at substantial risk of recurrence of your PEM and worsening of your symptoms. If I could have relived that moment in my life again, I probable would have waited 6months with no symptoms before pushing my exercising limits.
     
    jpcv, echobravo, PatJ and 7 others like this.
  8. Sushi

    Sushi Moderation Resource Albuquerque

    Messages:
    15,414
    Likes:
    23,790
    Albuquerque
    I have a similar story. I was again able to exercise and loved it, then did too much and never recovered.
    In my case, I had been more or less in remission for a couple of years yet still relapsed and 12 years later have not recovered.
     
    jpcv, PatJ, Learner1 and 1 other person like this.

See more popular forum discussions.

Share This Page