Limbs falling asleep—anyone else?

Jonathan Edwards said:
It is best not to attribute any symptoms to ME/CFS unless advised to do so by a doctor.
Limbs falling asleep is not a recognised feature.
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Yes, and even if a doctor says a symptom is due to ME/CFS, it's still worth maintaining some skepticism. As @Spartacus says, some doctors are happy to attribute just about everything to ME/CFS/hypochondria.

But for this particular symptom, I do suspect it is part of my ME/CFS. when I and my two children developed ME/CFS at the same time, we all started finding that we would wake up with 'dead' limbs, and get pins and needles when sitting and even when eating and driving (holding arms up at chest height). It was something we remarked on independently, before we knew that the others were experiencing it too, and it happened much more often than normal. It still happens. 20 minutes of driving can bring on pins and needles in my arms, I end up driving with alternating hands, one hand on the wheel while the other hand slightly recovers resting on my lap.

Hoopoe said:
I also had low pulse pressure at the time. It was obvious something was wrong with my circulation. These symptoms suggest that there were local deficits in regulation of circulation.
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Yes, I too have measured very low pulse pressure. I've measured shock index too, and that is low when my symptoms are worst. I can get very cold hands that don't warm up. My son and I get Raynaud's syndrome. I get fingertips that I can press and the skin doesn't bounce back to refill the dent. My son's lower legs are very large/swollen, and his face goes pale when he has done too much. I am sure there is a circulatory issue going on, and it wasn't present before the onset of ME/CFS. I think this is a clue to the health condition that I and my son have.

Limbs falling asleep and associated issues may not be a recognised feature of ME/CFS, but I've seen them mentioned repeatedly as abnormally frequent by people with ME/CFS.
 
Hutan said:
we all started finding that we would wake up with 'dead' limbs, and get pins and needles when sitting and even when eating and driving (holding arms up at chest height). It was something we remarked on independently, before we knew that the others were experiencing it too, and it happened much more often than normal. It still happens. 20 minutes of driving can bring on pins and needles in my arms, I end up driving with alternating hands, one hand on the wheel while the other hand slightly recovers resting on my lap.
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Yes, but I get that too, and always have done, but varying from decade to decade and month to month inexplicably. It is normal for a very large number of people. It wouldn't be surprising if people with ME/CFS had it simply from shifts in body usage.
 
But in our case, there were three of us with ME/CFS onset at the same time, and with the onset of the numbness etc at the same time as the ME/CFS. And at that time, we were all still trying to maintain our existing activities, which included a range of sports. And, it would come on after sleep, and during the day - after different sorts of body usage.

I believe it was not normal. I had not experienced something like that before, neither had my children.

Maybe whatever caused your numbness to come and go actually has a similar cause to what caused ours? How do you know that fluctuating high frequency numbness/pins and needles is normal for a very large number of people? I hadn't heard of people getting arm numbness from 20 minutes of driving, or sitting at the table holding cutlery before.
 
Hutan said:
How do you know that fluctuating high frequency numbness/pins and needles is normal for a very large number of people?
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Hutan said:
I hadn't heard of people getting arm numbness from 20 minutes of driving, or sitting at the table holding cutlery before.
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I remember my parents telling me they got it even when I was a child. I have asked people about it as part of history taking for decades. Most people happily discount limbs going to sleep in these situations and clearly distinguish things like carpal tunnel syndrome or cervical root compression. Only quite recently when I had real carpal tunnel syndrome did I appreciate how different it is (I now get both on the left).
 
I did regularly have my arms falling asleep when I was much more severely impaired and largely bed-bound, I attributed this to spending several years lying down, a combination of postural issues and deconditioning. More recently as I spend more time upright my legs more often go to sleep if I sit on a dining chair for too long.

It is possible that this relates to blood circulation, but deconditioning/muscle tone are perhaps more likely. (Presumably circulation in the limbs is also impacted by movement and muscle tone.)
 
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