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A Little Poisoning Along the Road to ME/CFS
Looking at my symptoms, many of which are far less these days and some are gone, it would be easy to figure that I'd just been dealing with some heavy-duty menopausal issues.
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How long do your PEM setbacks last?

Discussion in 'Post-Exertional Malaise, Fatigue, and Crashes' started by Aerose91, Nov 3, 2013.

  1. PNR2008

    PNR2008 Senior Member

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    Now I can't sleep, feel wired and tired, my essential tremor in head and hands is much worse. Too much stimulus causes confusion and nervousness and occasionally have very depressive thoughts. This is payback for doing 3loads of clothes, changing my bed and walking my dog. Damn this disease.
     
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  2. Aerose91

    Aerose91 Senior Member

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    I get the same thing. If I do too much I don't find out until I try to sleep in which case misery sets in. I'm sorry you're going through this.
     
  3. SDSue

    SDSue Florida

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    This is exactly my experience. I, too, live alone and must do some things. Things which inevitably leave me back in bed, unable to sleep, sick, and calling on a friend for assistance.

    Damn this disease, indeed!
     
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  4. jann1033

    jann1033 Senior Member

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    This may not be textbook pacing but I was able to increase activities by just resting. Like I'd at first only be able to unload the dishwasher and have to sit down for an hour or so maybe lay down, till I didn't feel tired from that exertion, then I'd load the dishwasher, sit down etc. Sometimes I could do something seated, like email while I rested, sometimes not. I kept adding more and more. It literally took me years but was worth getting off the crash cycle. And of course I had to lower my standards some. But I actually accomplished more in the long run even though it took me 3 times longer cause I wasn't dying the next day or two.
     
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  5. peggy-sue

    peggy-sue

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    Unloading the dishwasher is something I do in stages - it's far too big a job of up-and-down movements,
    lifting heavy things and holding them out from your body,
    to be doing it all at once.

    I've ended up passing out while trying to get it finished all at once.

    The kind where you have to get down onto the floor NOW and stay there for a nap of 4-5 hours, before trying to get up.

    As to PEM - the longer I've been ill, the longer it takes to start.

    It's now about a week or so later I suffer. How long I suffer for depends on how drastically I've overdone myself.

    I'm not sure I'm over the setback from being on holiday for a week last year yet.
     
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  6. jann1033

    jann1033 Senior Member

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    My cooking has gone downhill so not much but glasses, cups, small stuff in our dishwasher anymore Lol, my problem is more dropage.
    I used to love to cook and bake, still love it but recipes are too hard to follow since i have to read the same step a dozen times( how much cinnamon again? And again ..and again ..lol)and I'd buy something and it would spoil before I felt like making it anyway. Another one bites the dust Lol!
     
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  7. peggy-sue

    peggy-sue

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    You are not the only one with big plans!

    (and food going off in the fridge)

    Sometimes I do make a great big pot of stew so that I can freeze loads. I've got 6 lbs of meat in the freezer, just waiting for me to have enough time/energy/impetus to make a curry.

    (It's only been there a few months.)

    But I will make it over several days.

    I use a lot of frozen veg.
    It's cheaper than fresh, already prepared and packed full of vitamins because it's frozen quickly.:thumbsup:

    I get everything prepared over one or even two days, and cook it on maybe even the third day.

    I've not done any baking for ages. :(

    There was the day I made Irish Soda bread without any salt in it... :bang-head: had to bin it and start again.
    I left the salt out the second time too. :bang-head::bang-head::bang-head:
     
  8. taniaaust1

    taniaaust1 Senior Member

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    I love to cook, well used to.. its disheartening when you wreck what you are cooking due to your brain. Your idea to prepare food stuff one day and then cook it the next is a great idea as Im usualy worn out by the time Ive made something and then just end up burning it. This has helped ruin my joy of cooking.
     
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  9. SOC

    SOC Senior Member

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    My PEM takes 3-4 days to start, but it generally lasts a minimum of a month and in the past has lasted months to years. I can't tell the difference between PEM and a flare. Both give me an exacerbation of ME symptoms.

    I was, a month ago, better than I've been in years. I overdid, cognitively only, preparing for a new job and now I'm in what I would consider the mildest PEM I've ever had, but it's still clearly PEM. I'm trying to rest a reasonable amount, have backed down on some of my household activities, but I'm still in PEM after 3 weeks. I've never been able to recover from PEM in a few days.

    In the past, I didn't get back to my pre-flare condition. Each flare left me a little worse. That seems to have stopped now that I've dealt with a bunch of infections.
     
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  10. soxfan

    soxfan Senior Member

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    My PEM sometimes starts immediately or a week later. Sometimes I can't pinpoint what I did when that happens. I am wondering if anyone just gets severe tiredness and feeling totally drained with PEM. That is all I ever feel as I really never have had pain. I also get the overstimulation feeling inside along with vibrating in my chest area. Also poor sleep as in waking many times.
    I have been told in the past that this isn't considered PEM as but if it isn't then I have no clue what happens to me.

    I usually am unable to do much but either lay in bed or sit in a chair. It can last a day or many days....

    When I was first sick I really didn't have PEM as I just couldn't do much at all. I could only work and shop if someone was with me. For years there was no social activities or family gatherings. I would just stay home. I can do some of that but always suffer afterwards...
     
  11. Mij

    Mij Senior Member

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    Interesting to read all the different PEM experiences.

    When I first became ill I didn't have PEM for the first 10yrs, I didn't do anything at that time to cause it so that could be why. not sure. I started experiencing it when I started aerobic exercise during a period of improvement in my health. The PEM gradually got worse as I continued but I didn't understand what was happening so when I got over it I continued the exercise :bang-head:

    My PEM can start within 2 hour to 12hours of over exertion. Only one time in the last 14yrs did it start 24hrs or so after. It completely caught me off guard, I was not expecting it and thought I had gotten away with over doing- but no.
     
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  12. Mij

    Mij Senior Member

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    Yes, forgetting ingredients is sooo frustrating especially when you are looking right at them and it doesn't register to add it to the recipe. Banana bread just doesn't taste the same without the bananas. I've done this x3.
     
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  13. peggy-sue

    peggy-sue

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    Oh dear! Banana-free banana bread.:confused:

    I'll bet it's not as bad as bread without salt - it's not just the flavour - salt does something special for the texture of the bread - it's the "flour improver" part.

    Without salt, bread is only suitable for replacing (or cracking) kerbstones.
     
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  14. Mij

    Mij Senior Member

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    Do you have a crock pot? I use this frequently, it's especially nice in the warmer weather because it does not heat up the kitchen. It's great for making stews and flavour is so nice because it's slow cooked. Just chop everything, throw it in and it'll cook when you nap, you don't have to watch it. I don't have a timer on mine but when I need to replace it I'll get that feature. You have to remember to turn it on though lol I've forgotten that a few times.
     
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  15. SDSue

    SDSue Florida

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    Is it just me, or......

    I'm finding that my PEM starts after about 4 days. (Early in the illness it was closer to 24 hours.) What's odd is this - on about day 3, I get a big reduction in my POTS symptoms with a noticeable surge in energy and ambition. Then the crash comes fast, even if I don't do anything during the "surge".

    The crash begins with wired/tired and emotional lability, and progresses to bed-bound quickly. Seems to last 2 or 3 days.

    I have to wonder if part of my crash is due to an activity-induced adrenalin surge that peaks at about day 3???

    You'd think by now I would stop looking for patterns and predictability, but it gives me a (false) sense of control over this madness.
     
  16. soxfan

    soxfan Senior Member

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    @SDSue....I really think a lot of my PEM is because of the adrenalin surging. Then went it quits I quit. I have been trying to figure out for years any way to predict what to do or not to do and haven't been able to yet. There are times when I can do the same activity at different times and crash sometimes and others get through okay.

    Mine also begin with the wired/tired feeling inside and then progresses to crazy bad fatigue. I think once I overdue even if I stop ahead of time it is too late and the PEM or crash will occur.

    You are not crazy because I am the same way. Sometime it starts immediately or sometimes days later.

    For example...just 2 weeks ago I started seeing flashes and black spots in my eye. Now I am new to the area and didn't have an eye doctor yet. We managed to find an emergency office that could take me right away. Come to find out I have something called visceral detachment. It was very frightening at the time and I am still seeing flashes and spots.

    I think this could be part of the major crash I am having now even though it occurred weeks ago.
     
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  17. SDSue

    SDSue Florida

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    @soxfan I happen to know a bit about the eyes. ;) How old are you, if I may ask.
     
  18. soxfan

    soxfan Senior Member

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    58...my eye doctor said it is age related and because I have been near sighted most of my life that is also a factor. I had lasik done last fall so I don't need glasses anymore except to read.

    She explained that the spots(floaters) will always be there but at some point my brain will begin to ignore them. I have to be checked again in a month to make sure the gel that came off is not causing the retina to get torn. She also said that I will most likely at some point get it in the other eye...what fun.

    My neighbor has the same condition....
     
  19. SDSue

    SDSue Florida

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    Sounds like you got the perfect explanation. Glad to hear it.
     
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  20. SOC

    SOC Senior Member

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    My PEM starts after 4 days also. During this latest episode I have been taking first morning BP and HR per my doctor's instructions. Interestingly, my BP, both systolic and diastolic, increased significantly just as the PEM started. They shot up quite high (for me) and then have slowly decreased, getting back to about normal just as I started to feel (my) normal again.

    I wonder if you are having a similar situation. Perhaps you feel better day 3 because your baseline BP is higher then everything crashes. I suppose it could be an adrenaline surge. Sheer speculation, of course. :)
     
    SDSue likes this.

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