1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
ME/CFS: A disease at war with itself
We can all agree that ME/CFS is a nasty disease, particularly in its severe form, but there are abundant nasty diseases in the world. What is unique and particularly confounding about our disease is that so much controversy surrounds it, and not only surrounds it, but invades it too.
Discuss the article on the Forums.

Recovery advice from PEM/PENE

Discussion in 'Post-Exertional Malaise, Fatigue, and Crashes' started by Nielk, Jun 3, 2013.

  1. Nielk

    Nielk

    Messages:
    5,477
    Likes:
    6,099
    Queens, NY
    I am looking for any advice of what has helped you recover from PEM/PENE symptoms, besides just resting it out.

    Has there been anything that has sped up you recovery from crashing?

    For me, my PEM/PENE symptoms seem to start a downward cycle that is so hard to climb back from.
    Sleep is one of the symptoms that become aggravated when I am crashing. This in turn affects pain, weakness and other symptoms. It is not just a matter of taking a nap or resting for a day. It takes a long time to build my state back up to where it started from. Meanwhile, I just lay in bed and am at the mercy of time...just waiting it out until I am capable to bring back some kind of function. Any advice as to how to speed this up would be much appreciated.
     
  2. xchocoholic

    xchocoholic Senior Member

    Messages:
    2,940
    Likes:
    1,613
    Florida
    The only thing I've found helpful so far is to rest / sleep in a dark room. I keep the tv on something non stimulating. This environment allows my brain to recoop faster. IMHO, this just indicates that my PEM means that my brain needs to rest. I have no idea what chemicals may be involved. I haven't found it yet tho and I've tried quite a few.

    I can use caffeine and vitamin water xxx to keep me going for a few days but then that stops working too. Pushing my body this way doesn't bring back my brain function tho. o_O It just allows me to keep moving. I'm currently experimenting with nicotine to see if that helps. I think it's helping me multi task but I won't really know the results until I've experimented with it more. Google nicotine benefits if you want to see how it works tho. They're seeing results in Alzheimer's patients.

    For sleep, have you tried melatonin and 5HTP ? I need the combo because my body isn't producing these on it's own anymore. I was taking theanine for my nocturnal myoclonus (jerking when entering REM) but found that Klonopin actually works better for me. Theanine is used for anxiety but works like Klonopin. I use more or less depending on how much I need.

    Sorry .. no majic cures here ... lol ... x
     
    Nielk likes this.
  3. Sasha

    Sasha Fine, thank you

    Messages:
    8,812
    Likes:
    8,276
    UK
    ahimsa likes this.
  4. Hugocfs

    Hugocfs Senior Member

    Messages:
    110
    Likes:
    76
    U.S.A.
    I heard of a theory recently that the reason for the crash is excessive oxidative stress which damages the mitochondria. The damaged mitochondria basically undergo dissolution resulting in a greatly reduced number of mitochondria. You only recover as the mitochondria replicate over time. So unfortunately, the best remedy is probably just time and taking it easy. This is just a theory, but it makes sense to me. I wouldn't doubt that the excess oxidative stress is damaging other systems as well that need time to repair. For me when I crash bad, it seems like it takes a good two weeks to recover to get back to baseline.
     
    Nielk likes this.
  5. Nielk

    Nielk

    Messages:
    5,477
    Likes:
    6,099
    Queens, NY

    Thanks, Sasha.

    It sounds like diet, hydration, saline, calming the mind are all helpful.
    Many say sleep is important - which makes sense. My problem though now is that I am crashing and I can hardly sleep. This is scary to me because my sleep has been improving throughout this year and now I seem to be back to square one. I hope this doesn't last too long.
     
  6. Sasha

    Sasha Fine, thank you

    Messages:
    8,812
    Likes:
    8,276
    UK

    Sorry to hear that, Nielk - it's scarey when that happens. I hope it might well wear off - I find that some things do just go back to baseline on their own.
     
    Nielk likes this.
  7. SOC

    SOC Senior Member

    Messages:
    5,369
    Likes:
    6,492
    USA
    Sorry to hear you're crashing, Nielk. :(

    I'm one for which resting was the only thing that helped. I don't know if this is a factor for you, since you are not sleeping well, but I found that sleeping whenever my body wanted to was best. My circadian rhythm could get all messed up during PENE, so if I tried to stay up during the day and sleep all night I was a mess. I ended up sleeping whenever I could -- and I sometimes slept for long stretches, just not necessarily at night. As a recovered from the PENE, my circadian rhythm would adjust back to something resembling normal. I can't explain it, I just report it. :D
     
  8. Nielk

    Nielk

    Messages:
    5,477
    Likes:
    6,099
    Queens, NY

    This is interesting because I do find that my circadian rhythm is messed up. I slept Saturday afternoon for a couple of hours and than was up most of the night. since then, I have been trying to stay up all day so that I can sleep at night but it's not working. Maybe I should just sleep when I can.
     
  9. Mij

    Mij Senior Member

    Messages:
    725
    Likes:
    793
    The only thing that ever helped me was mag/taurine injections. I was fortunate that I was taking them years ago and when I overdid some exercise, I took a shot and it calmed my brain. I still got PENE but it certainly made it easier to feel restful.. It's not practical to have handy to use when you crash though, unfortunately.

    Nothing else I've tried worked, not even a little.
     
    Nielk likes this.
  10. SOC

    SOC Senior Member

    Messages:
    5,369
    Likes:
    6,492
    USA
    Nielk:
    Oh, oh! I just remembered something that might help. :D This didn't work for me, but my daughter could pull out of a crash much more easily if we put her on the Pall protocol for the duration. I can't say if it was the whole protocol, or some specific factor, but it helped her a lot during crashes.

    The Pall protocol contains lots of antioxidants and works as a methylation treatment, so it could be either or both of those factors that helped. Or, of course, the nitric oxide cycle issues Prof Pall discusses.

    Perhaps you can look at it to see if there's something in it you're not currently taking.......
    https://www.prohealth.com/shop/product.cfm/product__code/PHK23
     

See more popular forum discussions.

Share This Page