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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Senior Member
I'm hoping someone here can clue me in to what is going on. I had a shaking fit today and i can't figure out if it is low blood pressure, low blood sugar, or just a neuro symptom.

My hubby took my son sledding today and i finally got the chance to be alone which doesn't happen often. It felt like my body exhaled a huge deep breath and then i started shaking. My hands were shaking so bad i couldn't do anything. I ended up on the floor trying to breathe to calm myself down.

I had breakfast that morning and my usual coffee intake. I've been trying to sleep more but have only managed about 5-6 hours of fitful sleep a night. Has this happened to anyone else? Does anyone have any thoughts oon what might be causing it? I have been fighting off an infection...


Senior Member
i finally got the chance to be alone which doesn't happen often. It felt like my body exhaled a huge deep breath and then i started shaking.

Hi @kelly8 sounds like an stress-release reaction ( if I'm allowed to say so)
sometimes when you get into relaxation the body starts shaking, think here of someone healthy who, for instance, had a near accident like being overridden by a car.

then when it's over, the body-reaction sets in and you start shaking, that is healthy, it is the body getting rid of unneeded stress-accumulation.

Or think a horse after he experienced something a little stressing, you'll see him sort of rippling his skin. That is the soft 'shake-reaction'.

so, even though it may be something totally different of course, if it is this it is your body trying to get into a more relaxed state.

My body has problems with that since I've come down with ME...:( but I'm lots better in that department then 2 years ago :)


Senior Member
I had an episode of uncontrollable shaking a couple of weeks ago, where it felt like I was shivering really hard in response to the cold but without actually being cold. My hands/fingers also started turning blue after a couple of minutes. My brain was maybe foggier during this period, but nothing else seemed out of the ordinary. The shaking lasted maybe 15-20 min.

I rested/lay down within about an hour or so, and didn't do anything for the remainder of the day. Everything seemed fine after this and it hasn't happened again since.

The lead up to the shaking episode was: a couple of rough night's sleep (4-6hrs a night when I need 8-10hrs), a long day the previous day and a big lunch just prior. (So my body seems to have been struggling to send blood to all the right places... aka to my brain.)

I have POTS and have been doing some reading about treatments etc recently, and came across the term 'non-epileptic seizure' just by happenstance. In this case, not enough blood getting to my brain/ circulating around my body.

(If you run a Google search for "non epileptic seizure POTS", there are a few Dysautonomia Information Network forum threads that pop up, which seem to explain it a bit better.)

Even if you don't have dysautonomia or orthostatic intolerance of any kind, it may still be worth considering this..? I've seen a few PwME here and there say that they've had convulsions due to having ME (but at the time had no idea what the definite cause was, eg. blood pressure vs anything else).

Best of luck figuring it out. Hope it's nothing drastic :hug:


for me is OI, I get those when I am overdoing too bad. I don't get those too often anymore since I know when to stop now (most of the time).
Ahh and for some reason, when I take cinnamon it makes it worst. No idea why.