Does anything besides activity give you PEM?
- Thread starter Kimsie
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ahmo
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socializing.
But isn't socializing a brain activity?
That's interesting, do you get the headache, too? I don't have CFS, but I get the migraine aura without headache.
How many people here experience the aura, with or without other symptoms. I ask because both my affected sons get the aura. If you don't get the headache part then you might call the aura - eye spots or eye episodes. I had them for many years before I found out they were auras.
nandixon
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I get essentially exactly the same pattern of PEM, i.e., severe fatigue, the onset usually delayed by 1 or 2 days (for many years it was 2-3 days, now sometimes only hours), from eating certain foods (especially any milk products) or taking certain supplements (e.g., vitamin D, EPA or DHA), as I do from physically overexerting myself.
The single difference is that the foods that trigger "PEM" also tend to trigger migraines.
The single difference is that the foods that trigger "PEM" also tend to trigger migraines.
There was a recent thread about auras. I get migraines with aura first, but I have experienced aura without headaches. My auras without headaches would include feeling very off balance, nausea and sleepiness. I think for me it was hormonal changes because now that I'm in menopause I get intense aura's (they last for a few minutes before a hot flash hits) with no headache.
Post exertional malaise (PEM) is caused by exertion.
nandixon
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That's why I put "PEM" in quotes, in order to indicate that the food fatigue wasn't from exertion.
Nevertheless, the fatigue that I experience from eating certain foods (and certain supplements) feels exactly the same to me as the fatigue I experience from over-exerting myself with too much physical activity, and it occurs with the same sort of delay. (And that's been true since the start of my ME/CFS some 17 years ago.)
It's important to be aware that the physical/mental state that we perceive as "PEM" following exertion could also, in theory, follow from other things that don't actually involve physical or mental exertion.
Just as a simple hypothetical to understand the concept, say that some substance like a cytokine (or whatever) becomes elevated during exercise and this, through some mechanism like activated microglia and/or oxidative stress (or whatever), is what triggers a person's PEM.
Now what if certain foods, for whatever reason, trigger that same cytokine/substance that exercising does and that it has the same biochemical effect? A person could end up feeling the same - with no distinction between PEM from actual exertion and "PEM" from food.
This is exactly why I asked the question. I am trying to understand what causes the PEM by looking at other things that give the exact same symptoms.
ahmo
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I guess so.
Does anyone here not get aura's or other symptoms that could be called migraine symptoms? Did everyone who does have them have some of those symptoms before they became ill, or did some people not have any of these symptoms until they started their ME/CFS symptoms?
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I wonder if PEM isn't actually something that happens in the brain, and so even thinking or listening can cause it.
I wonder if it is only from brain activity or if it is also from bodily activity. You all probably know already, but if you sit back in a recliner working on a laptop thinking hard for a certain amount of time is that less likely to cause PEM than if you are up doing light housework or walking for the same amount of time?
ahmo
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@Kimsie There's another thread discussing this at present
http://forums.phoenixrising.me/inde...cal-and-mental-exertion-have-in-common.34799/
http://forums.phoenixrising.me/inde...cal-and-mental-exertion-have-in-common.34799/
Snow Leopard
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If I read too much, I get eye pain for days on end. 
@Kimsie I think it was me that started the recent migraine aura thread. Yes, it IS just migraine aura mostly without headache (occasionally I do get a slight one).I can feel slightly brain damaged after one - feel very uncoordinated and clumsy, and word finding difficult, and very drained physically, and I cannot walk so easily.
I did start these long before having ME/CFS (when I was around 20 and I am now 62) but they were very few and far between, and I suspect were triggered by food allergy then. Then they restarted in my 40s when I was pre-menopausal and seemed to come on at times of stress.
Around 5 yrs ago I had an ME relapse caused by an op, and then whooping cough and I began to get them more often and by then I was long past menopause so they are not really hormonally linked in my case. They were triggered by stress and stomach pain mostly then (I now have fairly severe food intolerance that can be controlled with a diet excluding gluten, dairy, sugar, and most processed foods, plus a few other things).
Then I noted that also when I was fighting a cold virus or overtired also triggered them.
More recently I have been getting them weekly, and have only just worked out that they are caused now probably by using methylation supplements and NOT reducing my thyroid meds (T3 only) thus driving my adrenals too hard. At least I think this is the reason and I am working on it now....
The effects have been horrible and disabling and rather scary. I have dropped my T3 by 10 mcg this week and am experimenting with it, but as I also have a bad stomach pain (I have chronic gastritis which I am trying to control without drugs) it's a bit of a slow journey.
I am reluctant to stop the methylation supps as I had a good window in Nov/Dec while using them when I improved a bit.
I did start these long before having ME/CFS (when I was around 20 and I am now 62) but they were very few and far between, and I suspect were triggered by food allergy then. Then they restarted in my 40s when I was pre-menopausal and seemed to come on at times of stress.
Around 5 yrs ago I had an ME relapse caused by an op, and then whooping cough and I began to get them more often and by then I was long past menopause so they are not really hormonally linked in my case. They were triggered by stress and stomach pain mostly then (I now have fairly severe food intolerance that can be controlled with a diet excluding gluten, dairy, sugar, and most processed foods, plus a few other things).
Then I noted that also when I was fighting a cold virus or overtired also triggered them.
More recently I have been getting them weekly, and have only just worked out that they are caused now probably by using methylation supplements and NOT reducing my thyroid meds (T3 only) thus driving my adrenals too hard. At least I think this is the reason and I am working on it now....
The effects have been horrible and disabling and rather scary. I have dropped my T3 by 10 mcg this week and am experimenting with it, but as I also have a bad stomach pain (I have chronic gastritis which I am trying to control without drugs) it's a bit of a slow journey.
I am reluctant to stop the methylation supps as I had a good window in Nov/Dec while using them when I improved a bit.