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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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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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