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Food for thought for anyone with PEM

Discussion in 'Post-Exertional Malaise, Fatigue, and Crashes' started by Rcasey524, Aug 1, 2016.

  1. Rcasey524

    Rcasey524

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    I hope you take the time to read this if you experience PEM. I am sure we could all agree that post exertional malaise has to be one of the worst symptoms of CFS (if not the worst). I am beginning to research CFS on the side as I do come from a science background and refuse to live like this for the rest of my life. This is only my opinion and I would like to know your experiences. I do not think PEM is only caused from over exertion of muscles directly. There are many theories on the cause of PEM and there has been some recent research done on gut bacteria linked to CFS. Here are my thoughts on that:

    If I do any strenuous activity I can expect to be defeated for the next 2-3 days. Strenuous activity usually involves bending down and muscle movement in the core which also puts some pressure on the gut. Almost as it is causing toxins/bacteria to leak from the gut into the blood causing an immune response and depending on the severity may need more/less of a trigger.

    I have experienced PEM from being on a jet ski which does involve some strenuous activity, however there is a lot of bouncing around. I have also experienced it sitting on the back of a snowmobile which required minimal effort but again bouncing up in down over bumps. Lastly, I experience PEM if I go on any type of rides like roller coasters, etc. I have to deal with post exertional malaise EVERY time I do one of these activities and it lasts for a couple of days.

    Meanwhile I began to think about it as if something was being absorbed into my blood from my intestines (I know there is research on this now). I figured it was caused by the "shaking" movement so I decided to experiment.

    This is when I decided to not eat for the entire day and decided to go jet skiing again expecting to be destroyed. Other than feeling hungry...I experienced zero symptoms of PEM. I also had plans to go to an amusement park and again did not eat for the entire day. I did make it a point to hit every bumpy ride ha...I experienced zero symptoms once again. This was the first time in a long time I was able to do these activities without feeling terrible in a long time.

    Just to confirm, I recently decided to eat before going jet skiing figuring maybe I wouldn't be bothered. Well, I was wrong and completely destroyed after and the next couple of days.

    I am not saying triggering PEM is a good idea however, If you know you definitely have to do something which will trigger your PEM, it would be nice to know if you do not eat a while before hand if you experience the symptoms. I do think there will be some variation from person to person like severity and gut motility but I do think it would be good to know all of your experiences. Food allergies/intolerances are another factor but if enough people have similar experiences I will begin to look for other variables which may play a role here.

    Let me know your thoughts. Hope this helps
     
    rosie26, Hip and South like this.
  2. Bansaw

    Bansaw Senior Member

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    The thing that comes to mind when you mention the "bouncing around" is lymphatic disturbance. Many people will say they've had lymphatic clearance after trampoline use for example, and many buy a trampoline for that purpose actually. Its interesting you say that fasting helped PEM.
    What triggers my PEM is heavy lifting of muscles that I dont use regularly. I actually do weights (chest and legs) regularly and have no problem with PEM after that.
    Maybe its the initial release into the bloodstream of something stored up in a muscle thats not been used in a while (at least for me)? Some people find relief from PEM by using Bicorbonate of Soda after exercise because this can neutralise lactic acid thats released from muscles.
    I wonder when you were bouncing around you used muscles to grip and steady yourself(?)
     
  3. ukxmrv

    ukxmrv Senior Member

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    Dr Ramsay described his ME patients as having a response to trivial exercise. I can get this from brushing my hair.
    Not eating sadly makes no difference for me
    Glad though that you are looking at your triggers and examining your response.
     
    Webdog likes this.
  4. Mary

    Mary Senior Member

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    @Rcasey524 - I get PEM from a 2-hour (non-bouncy) car ride combined with other light activity (having breakfast with family), or doing grocery shopping and a few other things, any sort of exertion that combined exceeds my daily limit of about 3-1/2 hours of light activity. And if I go without eating even one meal, I get completely wiped out. I can't skip meals like some people do.

    If I didn't eat and then went jet skiing (if that were even possible!) I'd probably be in the hospital.

    But - as ukxmrv said, I'm glad you're finding what works for you.
     
    Sidney and Webdog like this.
  5. *GG*

    *GG* Senior Member

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    I can exercise, but would get to weak from Not eating. I can bicycle a good spell, small hikes, and snowboard in the winter. (Get to rest on the lift ride up).

    GG
     
  6. erin

    erin Senior Member

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    I can't even go in the bus never mind the jet ski. I get travel sick on every kind of vehicle and sea travel is out of question for me.
     
    Mel9 likes this.
  7. South

    South Senior Member

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    I'm interested in the angle you present, @Rcasey524 - and wish I had thought of the logical process of elimination you performed to figure out your own possible solution.

    Although I don't have CFS/ME, and rarely have something resembling PEM, PEM does happen to me if I abandon my no-sugar diet, a diet which, for me anyway, keeps my gut happy. If I have indulged in sugar, then in the following day any movement that flexes the muscles in my abdominal area feels uncomfortable, but I never tried avoiding those movements. I had just done them anyway (low effort movements that happen to flex the stomach area).

    Maybe if I avoided those movements on days of/after eating sugar I could avoid some of the PEM reaction....
     
  8. AndyPR

    AndyPR Senior Member

    Back in my final foolish attempt to exercise myself back to health I was doing an early morning workout prior to eating, still got PEM though. Glad it works for you but it didn't help me.
     
  9. ghosalb

    ghosalb Senior Member

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    There is lot of research showing fasting can be beneficial in many ways (there are threads on that here). However, I could not fast longer than few hours until I changed my diet from reasonably healthy regular non veg diet to completely veg diet with 60-70% green veg and fruits like berries. Now I can fast from dinner to breakfast for 12 hours without feeling weak like before. I don't have to carry food when I go outside anymore. I have not tried its effect on PEM but I am going to look into it. I like your idea of doing experiments on yourself.
     
  10. rosie26

    rosie26 Senior Member

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    When I am at my sickest I cannot eat. I am very weak and can barely walk. I am only taking a couple of sips of liquid every 10-15 minutes and I try to take a tiny nibble on soft food which is extremely hard to swallow.

    It seems to me that when I am at this stage of illness my body needs to fast and after about 3-4 days I start to slowly improve. I have found lemonade drinks very helpful to get my strength and appetite back. If I don't drink any lemonade during this very ill stage I find I am weaker longer.
     
  11. Rcasey524

    Rcasey524

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    I apologize for the delay everyone. I thought I may have been on to something... I think there are just so many factors that can go into CFS it makes it so difficult to pinpoint anything. I was hoping this would help atleast some of you. I just find it crazy how if I literally starve myself I can do almost anything normally. And if I eat within a certain time frame prior to doing any activity I am destroyed for a couple of days.

    I was just tested for histamine intolerance and will update on results if this thread is still active.
     
  12. Mij

    Mij Senior Member

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    @Rcasey524 do you have OI? Eating lowers BP, so it may not necessarily help PEM but help with OI. I eat smaller more frequent meals which helps.
     
    Jennifer J, ahimsa and Valentijn like this.
  13. Little Bluestem

    Little Bluestem All Good Things Must Come to an End

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    Post you results here whenever you get them. Threads on this site are never considered inactive. With so much cognitive dysfunction going on, we prefer that everything on a particular topic stays in the same thread.
     
  14. soxfan

    soxfan Senior Member

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    Mental exertion causes my PEM. I can do physical stuff to a minimum without any consequences. What I mean is I can walk...hike...housework etc...nothing aerobic or running...although I can ride my bike.
    Not eating would make me feel even more tired...I wouldn't skip a meal unless I was crashed in bed and couldn't get up..
     
  15. serusaert

    serusaert

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    hi @Rcasey524,

    i have histamine intolerance (HIT) and have had it for some time now. i can tell you that blood tests do not necessarily reveal it. in all honesty, histamine challenge is the most sure way to diagnose it. unfortunately this can be painful but at least it will give you confidence in the diagnosis - either way.

    one good challenge food is a pack of dried whole bananas - the soft kind that are often sold at health food stores. these will be loaded with histamine. tuna preserved in oil is another good challenge food. dark chocolate will work too (did you know it's fermented?). smoked/dried fish would work too. try a couple of these at the same time if you want a really good challenge.

    if you want any tips for cooking/coping with HIT, message me. i have been coping with it for years now. i had HIT well before i developed CFS.
     

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