Posted , 8 users are following.

Hey Guys, I hope you are all well.

I have a few questions to ask, about something that has confused me greatly following my mild (but still horrible) CFS diagnosis a few months ago.

Basically, I am kind of confused as to what constitutes PEM? Lots of sources say it is even greater exhaustion etc following mental or physical exertion.

When I overdo it, I seem to get the following symptoms: lightheadedness, a horrible feeling of pressure in my head, hot face, sensitivity to noise etc. This lasts for up to 5/6 days and I really can't do anything to negate the effects. However, I don't really get any more tired than usual, infact I probably nap less when I am experiencing one of these 'flare-ups' or whatever they are. These are currently occuring in about a 1 week on, 1 week off cycle.

However, the thing that confuses me, and what I wanted to ask about - these symptoms often come on even if I haven't exceeded my limits. Often I have had a very restful few days, no work, no uni, and I have spent a good deal resting, and out of the blue - these symptoms will come on. Other times, I will have had a really hectic night at work (i work in hospitality, would not reccomend with CFS lol), and a busy time at uni and I will feel no worse in the next few days????

This has kind of led me to believe that it may not be to do with PEM.

So what I was hoping you guys could help me with, would be to depart your wisdom on the subject of PEM. how have you found it to work? do you think what I am expereiencing is PEM?

OR, do you think I might be experiencing symptoms of something like POTS? I am not sure whether these symptoms warrant a visit to a doctor, or if a doctor could help me in any way.

Any help would be greatly appreciated, at this stage in my life (a 20 year old boy who was previously very fit), i have accepted that I will be unwell for a little while, I am OK with that and have made adjustments. However, these new(ish) symptoms are really a pain in the neck, and add a whole new dimension to this whole CFS experience.

Thank you for any help you can give me, i appreciate it.

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  • Posted

    OK. I'll give this a shot. My understanding and personal experience of PEM is that, as you've mentioned, it refers to increased exhaustion after I exert myself. POTS--postural orthostatic tachycardia syndrome--is just that. In English, it means your heart starts beating rapidly when you stand for a prolonged amount of time. The other symptoms you mention, like lightheadedness, etc., can come on when ME/CFS is in a heightened state, for whatever reason, or for no reason at all. Sometimes I know why I feel worse, because I know I've overdone it. But sometimes my symptoms flare just because. I think it's the illness saying, "Ha, you think you've got me under control, I'll show you!" It's just a nasty business all the way around. Given that you have ME/CFS, you are lucky (though I know that seems a weird word to use) to have a mild case. So to keep it that way, get plenty of rest and pace yourself. You're young, which is a good thing for chances of recovery. You really don't want the disease to get worse, which it can if you don't take it seriously. Best of luck.
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  • Posted

    I could not have put it better myself Jackie. I will just add that I have had M.E. now for 32 years and am nearly 70, so I think ther is not hope that i will ever recover fully from it. I manage it by resting and pacing, but that does not always work. It is horrible and the lack of understandibg amongst professional (i.e. doctors and the M.E. clinic, family and friends) is extremely  hard to deal with. My best friend Anne who has cancer seems to be the only one who fully understands my condition.
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  • Posted

    Hi, people have such a variety of symptoms.

    My PEM symptoms are like this:

    Do a little too much, physically or socially and hours later a deep physical fatigue which can get gradually worse for a few days and take a week or more to go. During that time, sitting up is unpleasant, so it's necessary to recline. If I really overdid it (maybe an hour pottering around) then often reclining too difficult and half an hour or more laying dead still, dead flat is needed. At those times, my memory could be poor. Sometimes also a constant mild headache. I used to be very very fit. If not sleep during the day, but have to lay down.

    This tiredness is nothing like the tiredness I remember after a long hard workout.

    If you had previously been very active, it's stunning how much can't be done. In terms of hard physical effort and endurance, I went from being able to cycle hard for three hours to maybe 20seconds!

    I've found very gentle cycling on an electrically assisted bicycle far more easy than slow walking, and more rewarding.

    I've also found it necessary to develop a few low energy hobbies- like knitting and sketching.

    But, sorry, I couldn't be sure what you have!

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  • Posted

    I have ME/CFS/SEID or whatever term the medical community is using these days, and Fibromyalgia.  I have similar problems as you describe.  But, something you might want to think about is the weather.  Today, for example, the barometric pressure in this area climbed markedly.  I feel much, much sicker than I should since I have been fairly good at pacing myself.  Also, really hot or cold days make me feel incredibly worse.  I don't know why exactly, but many people experience a corresponding relationship between weather and their symptoms.  I hope this helps.  Take care!wink
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  • Posted

    Hi thebighomie;   I'm not sure if this will help with what you are trying to sort out.......but if you go into the PEM versus POM, you will get an explantion of how our cells work, and what they need etc............look for the correlation of Lactic acid, calcium,  bicarb etc and it will explain how, if not having the correct amount in our bloodstream and cells, this sets off a chain reaction.......which can occur over a period of time.....hence maybe the answer to why "your symptoms come out of the blue"...and for no particular reason in relation to your levels of activity......this is also a reason why some people get migraines for No apparent reason......too scientific to put ALL down here, but makes for Good reading....let me know if you find/not,  the answers?.......Bron
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