Limbs falling asleep—anyone else?

[Verity]

I am trying to figure out if this is an ME symptom or if I should be concerned.

Recently my arms and legs have started falling asleep easily. It happens multiple times a day. Has anyone with ME experienced this as part of the illness?

Might be a reach, but ME can cause such random symptoms! I thought I’d check with you all before bringing it up to a doctor.

 

[V.R.T.]

This started happening when my ME went from mild to moderate, and is really bad now I'm severe. I had two MRIs (brain and spine) a year or so later to rule out MS. But it could be something else that's been missed of course.

 

[Kitty]

Recently my arms and legs have started falling asleep easily.

I'm not sure what you mean by falling asleep.

I think of that as the numbness, coldness and pins and needles that you get when you've accidentally reduced the blood supply to a limb by sleeping in a funny position—but it might have other meanings.

 

[Verity]

This started happening when my ME went from mild to moderate, and is really bad now I'm severe. I had two MRIs (brain and spine) a year or so later to rule out MS. But it could be something else that's been missed of course.

Interesting, I wonder what on earth it could mean if this is actually a symptom of ME.

I'm not sure what you mean by falling asleep.

I think of that as the numbness, coldness and pins and needles that you get when you've accidentally reduced the blood supply to a limb by sleeping in a funny position—but it might have other meanings.

Yes, that’s exactly the feeling I mean! It’s not odd by itself, but it’s happening to me very abnormally frequently.

 

[jnmaciuch]

Yep it’s definitely a poor circulation thing for me. It’s extremely easy for a limb to go numb if it’s positioned even slightly weird. I’m pretty certain it’s circulation-related for me because it tends to be worst on days when my fingers and toes also feel cold. Was not an issue prior to ME/CFS.

 

[InitialConditions]

I get a numb patch on the outside of my left thigh when lying down. It's always the exact same spot. It's not quite pins and needles, it just goes sort of dead/numb whilst the rest of the leg is fine. I think it could be Meralgia Paresthetica, but it happens more when I'm crashing and it only seems to happen in the daytime.

 

[Verity]

Yep it’s definitely a poor circulation thing for me. It’s extremely easy for a limb to go numb if it’s positioned even slightly weird. I’m pretty certain it’s circulation-related for me because it tends to be worst on days when my fingers and toes also feel cold. Was not an issue prior to ME/CFS.

Interesting! I have freezing toes and fingers. Didn’t know that might be ME-related.

I get a numb patch on the outside of my left thigh when lying down. It's always the exact same spot. It's not quite pins and needles, it just goes sort of dead/numb whilst the rest of the leg is fine. I think it could be Meralgia Paresthetica, but it happens more when I'm crashing and it only seems to happen in the daytime.

That sounds very odd! Especially the fact that it happens when you’re crashing.

 

[AliceLily]

The hours I have spent lying down the last couple of decades is beyond belief. I haven't experienced limbs going numb thankfully. Something that has always struck me though with the ME and all the lying down I do my body does not get sore from it. I remember before ME it would get sore as if I didn't need rest during the day.

 

[Cinders66]

I am trying to figure out if this is an ME symptom or if I should be concerned.

Recently my arms and legs have started falling asleep easily. It happens multiple times a day. Has anyone with ME experienced this as part of the illness?

Might be a reach, but ME can cause such random symptoms! I thought I’d check with you all before bringing it up to a doctor.

My left arm yes

 

[Jonathan Edwards]

Might be a reach, but ME can cause such random symptoms! I thought I’d check with you all before bringing it up to a doctor.

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.

 

[Cinders66]

My left arm yes

Edit. On top of dysphagia I have multiple bizarre neurological symptoms including vision problems. My gp did basic neuro tests and decided nothing else seemed wrong.

 

[Spartacus]

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.

The problem is that once you have a diagnosis of ME, GP's attribute everything to it. I suspect if I went to my GP with my arms and legs hanging off with blood spurting everywhere, he would say "that will be your ME".
Though in this case the dead, arms etc probably is the ME. I had it for years. Seems better now. Maybe because I drink loads of oral hydration tablets? Not sure.

 

[Evergreen]

Something that has always struck me though with the ME and all the lying down I do my body does not get sore from it. I remember before ME it would get sore as if I didn't need rest during the day.

You're reminding me of a nurse who was trying to get me to sit out while in hospital (I have severe ME/CFS and my baseline is lying flat or on two pillows and only sitting more upright for meals and walking in brief bouts to loo, next room etc). She said:
"If I'm lazy for a day, I get sore too."
She didn't believe me that I have much less pain when in hospital because I'm doing much less physical activity.

 

[Jonathan Edwards]

The problem is that once you have a diagnosis of ME, GP's attribute everything to it.

But if you do not ask then the missed diagnosis is not their fault.

 

[Sasha]

The problem is that once you have a diagnosis of ME, GP's attribute everything to it. I suspect if I went to my GP with my arms and legs hanging off with blood spurting everywhere, he would say "that will be your ME".

I'm really sorry to hear that that's your experience with your GP, and certainly I've seen similar posts from other forum members. But I don't think I can be alone in having a GP who takes new symptoms seriously and checks them out properly. I'd encourage anyone with worrying new symptoms to ask their GP about them, and if their GP is a dud, to do everything possible to find one who isn't.

As we get older, more and more stuff goes wrong with our bodies and it's mission-critical to have a GP who will take new symptoms seriously. It's awful that it's so hard for many PwME to find such a GP.

 

[MeSci]

For the last few years my right hand has been going numb every day. It starts when in bed in the morning, and I often feel that it is a sign that I need to defecate, but I don't always defecate soon after it starts.

It's not there when I first wake, but it comes soon after, and is present at various times thereafter.

If it weren't at such a time I would suspect that it was due to computer use.

I think I had it before having a rotten tooth removed solved both my hypertension and my polyuria, so that I no longer need medication.

So I really don't know what causes it. I've given up going to the doctors, as I only get ten minutes and doubt whether I would get any sensible diagnosis.

 

[AliceLily]

You're reminding me of a nurse who was trying to get me to sit out while in hospital (I have severe ME/CFS and my baseline is lying flat or on two pillows and only sitting more upright for meals and walking in brief bouts to loo, next room etc). She said:
"If I'm lazy for a day, I get sore too."
She didn't believe me that I have much less pain when in hospital because I'm doing much less physical activity.

Yes, I've had all kinds of comment made to me too. Whether the soreness switch thing for me is to do with the ME or not I don't know but it was just something I noticed with my ME and may not apply to other ME's. I do get a sore neck with the ME so lying down can be uncomfortable trying to find a comfortable position.

Regarding the numb limbs I noticed after I had posted I was moving and stretching my lower legs and feet in bed. I do this a lot while lying down so more an auto pilot thing which probably is helping the lower limbs not going to sleep.

 

[Verity]

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.

You’re right! I will get seen regardless if it persists.

I kind of anticipate doctors finding nothing when I show up these days, so it will be psychologically helpful to know other ME patients report this if that happens. Having problems that no one ever finds an good explanation for is a common problem for a lot of us unfortunately.

But maybe it will be something standard for once. That’d be nice!

 

[Jonathan Edwards]

But maybe it will be something standard for once.

Well I get it all the time and have to bring back an arm or a leg to life every time I wake in the night.
But then I am old and my bones stick out in various places.

It is a very common symptom but it is still better to ask about it than put it down to ME/CFS.

 

[Hoopoe]

Recently my arms and legs have started falling asleep easily. It happens multiple times a day. Has anyone with ME experienced this as part of the illness?

Yes, something similar appeared together with a variety of other circulatory symptoms related to small fiber neuropathy and POTS.

For example I had difficulty sitting in a normal position because after a short time (minutes) parts of my leg and buttock would fall asleep. As result in some situations I could not find any comfortable position to stay in.

Another symptom was this: when my arm was hanging down from the bed, soon in the lower part there would be an uncomfortable, almost mildly painful sensation of the blood vessels being under too much pressure.

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. My interpretation: the falling asleep while sitting was the result of the body being unable to fully compensate for pressure on the blood vessels caused by sitting. The painful blood pooling was inadequate vasoconstriction in response to a position of the arm were it would be needed.