Poll: Have you ever experienced complete paralysis of a part of your body?

Have you ever experienced complete paralysis of a part of your body during ME?

  • I have NEVER experienced complete paralysis of a part of my body during ME.

    Votes: 32 68.1%
  • I have RARELY experienced complete paralysis of a part of my body during ME.

    Votes: 9 19.1%
  • I REGULARLY experience complete paralysis of a part of my body during ME.

    Votes: 4 8.5%
  • I regularly experience complete paralysis and it seems to relate to electrolytes such as potassium.

    Votes: 1 2.1%
  • I have been diagnosed with Periodic Paralysis (PP) WITH specific genetic mutations.

    Votes: 1 2.1%
  • I have been diagnosed with Periodic Paralysis (PP) WITHOUT any specific genetic mutations.

    Votes: 2 4.3%

  • Total voters
    47

Pyrrhus

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Irat

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I do experience complete paralysis of the whole body,( can only move my eyes when it happens and when i give order to move my arm nothing happens,like the connection to the brain is gone )but god thanks only for few hours about once or twicea month)if it happens,and it passes completely.i never try to analyse my symptoms,anymore as there are more than 200 and I just take it.my brain is screwed,
 
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percyval577

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I experienced complete paralysis for two times.

1. Before onset, when I had smoked too much weed too fast (in fact is was not much and not fast for more normal smokers). I went lying in a bed and couldn't move. I only thought, hopefully the house will not burn down. It vanished after I guess 1-2 hours.

2. After onset. I attended a party with Russians and drank too much wodka (though not that much, as I was quite used to drink from earlier times in my life). When riding home I rode and fell over a piece of wood and could not get up anymore. I only thought, hopefully no car will come (it was a very small street through a kind of small forest).

So both times it happened after an influence from drugs (THC, alcohol), which are known to have an influence on the DA system, if I am not wrong.


Interesting in the 2. example is, that I would have been able riding home, and only got paralysis after my action was disrupted. So I guess, that the brain hadn´t the capability to bring up a new synaptical pattern.

The more I think about it, the more the picture arises to me, that the actual problem occurs in the funnel shaped nucleus caudatus, may any influences coming from outside work directly or indirectly on it. The main impact might simply be of a strength, that a regeneration does not (sufficiently) take place.
 
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My hip flexors froze up on a walk a few blocks (which now i no longer attempt)....I felt paralyzed for several minutes standing by a phone pole.

felt like zero oxygen in the muscles, so not paralyzed, really.

I've been so weak i could not lift. towel. Thats diffrerent , too.
 

Pyrrhus

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I assume you don't mean sleep paralysis? This is the only paralysis I've experienced.
That's correct, sleep paralysis is an entirely different phenomenon.

But it's a very interesting phenomenon, so it may deserve its own poll...

I've been so weak i could not lift. towel. Thats diffrerent , too.
Yes, that's different too.

I have certainly had times when my muscles were so weak I could not move my limbs, but that's technically paresis, not paralysis.

People who have experienced complete paralysis describe something entirely different from paresis or extreme weakness.
 

BrightCandle

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I assume you don't mean sleep paralysis? This is the only paralysis I've experienced.
This is the only type I have had as well. I think it was one of the side effects of the gabapentin and other cocktail of shit doctors had me on years ago that caused multiple years of hallucinations and a few awake but asleep paralysis events. I haven't had either in a year.
 
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I'm not really sure how to categorize my experience. I'm guessing it's more like weakness than paralysis, but my carer noticed that the muscles I asked her to jab (see below) were tense, so it's possible that heaviness is how I experience muscle stiffness... my muscles do seem to be struggling to relax after use. Anyway, some details:

There's a sudden body fatigue where I know I need to get to bed quickly. If I take too long, my legs start shaking and my knees keep folding with each step; I've never pushed it to see if I completely collapse. After laying down my eyes my body feels heavy, and just opening my eyes seems too difficult (they flutter a lot when I try). It lasts for 15+ minutes, and if I fall asleep it's gone when I wake up.

There are also variations on this. Sometimes I feel exhausted and notice a lot of air hunger, and can move for a few seconds before needing to hold entirely still again. At other times I notice heaviness in limbs instead of my entire body. Trying to move heavy limbs seems to take so much effort; pushing usually causes them to shake, and I use other movements to get around the problem (ex: taking tiny steps instead of normal ones).

I'm still trying to sort out whether this is all fatigue or some sort of muscle problem. Self-doubt says I'm being overdramatic and just need to try harder to move during these episodes. I've had my carer jab a heavy area hard enough to see if I react reflexively, and found that while a heavy limb holds still other parts of me jump; but I can't really be sure that this is evidence of actual paralysis, as it's possible I was simply braced for the impact.
 
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In my case the symptoms come suddenly and it is as if the connection between nerves and muscles are blocked. I am not able to speak or to move. Often I feel it coming and I am able to reach my bed or a chair but there had been times when I fell on the floor or off a chair.
In the poll I have chosen rarely but there are times when it happens several times during a week and there are times when I have peace for several months.
 

Inara

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@Krokus, have you checked a connection to potassium? E.g.

you get paralyzed after eating more salt, or fruit and vegetables, or carbohydrates, or after a big meal, or after cold, or over-exertion? Certain meds? Does it get better or worse with light movement (like walking around or moving the arms)? How long are you paralyzed? At what time of day?
 

Woof!

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I've been paralyzed from the neck down twice.

The first time was in my 30s - I woke up fast and tried to walk too soon (the phone was ringing and I was on call). I fell flat on my face, nearly breaking my nose, and I was unable to move anything below my neck for 45 minutes. My housemate heard me fall, and she sat next to me as I waited for my blood pressure to rise so I could move again.

The second time (several years later) was scarier, and it was after major issues with fatigue had set in. I had just finished getting some deep muscle work done, and I was ready to get up off the table. Only I couldn't. I had spastic paralysis from the neck down due to muscle memory issues (I had had a horse roll over my head many years earlier). I was able to move again roughly 45 minutes later.

Two other times (both in my 40s) I spontaneously blacked out and fell, only to be revived by someone shaking me. In both cases, I couldn't move for a long time and, when I asked someone to get my stethoscope so I could listen to my HR with them holding the 'scope, I couldn't hear my heart beat at all (MORE than a little concerning...so I kept talking to prove I was alive).

Fun and games....not.
 

Woof!

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There's a sudden body fatigue where I know I need to get to bed quickly. If I take too long, my legs start shaking and my knees keep folding with each step; I've never pushed it to see if I completely collapse. After laying down my eyes my body feels heavy, and just opening my eyes seems too difficult (they flutter a lot when I try). It lasts for 15+ minutes, and if I fall asleep it's gone when I wake up.

There are also variations on this. Sometimes I feel exhausted and notice a lot of air hunger, and can move for a few seconds before needing to hold entirely still again. At other times I notice heaviness in limbs instead of my entire body. Trying to move heavy limbs seems to take so much effort; pushing usually causes them to shake, and I use other movements to get around the problem (ex: taking tiny steps instead of normal ones).
I know this feeling well. I experience it every time my body is starved for Ca++ or Mg++ (which is almost daily at various times during the day).
 
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I know this feeling well. I experience it every time my body is starved for Ca++ or Mg++ (which is almost daily at various times during the day).
I'll have to see if there's any correlation for me with those. The only thing I've noticed is that with the stiff/heavy feeling it seems to get worse if I have certain foods (mainly salad or a glass of milk), but I don't think that applies to the body fatigue.

Your other post... I can relate a little to some of that. Woke up once and tried to get up immediately, but my legs weren't working yet so they folded, and down I went; was able to slow the descent with some nearby furniture, so no damage. I've also spontaneously blacked out once, rag-doll walked my way down the stairs I had been standing on and woke up when I dropped to my knees at the bottom of them... I somehow wasn't hurt, but I began avoiding stairs after that.
 

Alvin2

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Well, there's "paralysis of the will", "decision paralysis", and "analysis paralysis", but I don't think these count either... ;)
Without the acetyl carnitine i can barely think at all, just typing this would be like thinking through butter (or concrete), almost undoable.