I haven't found anything to help either. It's almost like my tired brain is short firing the nerves on top of the skin. Only thing I know to do is lay down and allow my body the space to fall in and out of sleep as needed. Until I've gotten enough rest, the sensation will not go away. If I find something that helps, I will absolutely let you know. Blessings 🙌

In the beginning when I would fall asleep, I would get a sensation that some of my body parts were extremely bigger than the rest of my body. Like I will fall asleep, and I will feel like the thumb was the size of my body. Or another sensation I typically get when I am extremely tired I feel like my feet go numb, and I feel like.” pins and needles.”

I recently had an experience where my skin was crawling all over my entire body. This had never happened before. Typically my skin crawls in my face and scalp. Sometimes in my legs and occasionally on my upper back between the shoulders. But, it was time for my annual review at work. I was fine up until the morning of my review. Then all hell broke out, and my whole body was crawling. The stress caused a total body reaction that lasted an entire week. It was a horrible experience.

Sometimes. Me it is more in my arms, but I have that feeling in my legs others times. When we feel exhausted our body react also differently. Per example, my arms, or legs, or only one side of my body experience some twitch before falling asleep, which is called hypnic jerk. As people living with narcolepsy, with cataplexy normally, our body going to react just before falling asleep and going to a deep REM. The numbness in certain parts of our body could sometimes also be part of the sleep paralysis, I have experienced that along my 60 years living with that debilitating disability, when I fall aleep, or when I wake up, sometimes even both times.
Hope this will help. One support that I found it is to meditate before my sleep, this help me to relax, it work not all the times, but at least sometimes.

So my neurologist is trying to tell me that this has nothing to do with narcolepsy and I probably have restless leg syndrome. When I get extremely tired or when I’m about to go to bed, my legs, feel numb and my feet do you guys have that?