Unexplained neuropathy

You can add me to this list of weird symptoms. At times, it's like a bolt of lightening that hits the outside of the calves. Normally, right leg but I've had them in both different times. Makes me jump and it could be 1, 2 or 3 and it ends. Week, two or so later, again. Way worse than the test for PN. Didn't start until about 3 years ago.

I jump when it happens too! So strange!

I feel your pain. As a matter of fact I got one of those bolt while I was walking and almost fell. Good thing I was very close to the sofa.

Wow - For over a year, I just accepted that part of my nighttime going-to-sleep body ritual after lying down in bed included a big jolt in my left hip area, as I would be lying on my right side. I felt like I had CPR paddles on my abdomen trying to bring the hip area to life. The bed would jump, sometimes it roused my husband. Usually it happened just one time as I was settling and I would fall asleep soon after it would happen. I just realized recently it seems to no longer happen, though I have no idea what has changed.

@dbeshears1 -- Yes, come to think of it, my "bolts of electric" have slowed up as well, perhaps with warmer weather, more outside walking around?? Gotta wonder what's next down the road. It is very weird how we all share some symptoms but not all the same. Also, lately I'm experiencing more fingertip numbness which creates a challenge in taking pills. I'm thinking it might just be easier to put them on the floor to take them! Now that we are getting into warmer weather, my unusual sweating will be on the increase, a result of my sensory issues.

Hi Debbie, what you're describing when going to sleep sounds like a hypnic jerk (google it) that is a very common occurrence even in people without medical issues. I get those just as I'm falling asleep (often feel like I'm falling), but I also get electric shocks on occasion while I'm awake that are different and surely part of my neuropathy. The electric shocks are painful and don't make me jerk so much like the sudden jerk when going to sleep. The online suggestion to avoid hypnic jerks is to stay rested, avoid caffeine and other stimulants, and de-stress. Best of luck to you and your husband. 🙂

Hi NJ Ed - Numb fingers are definitely frustrating and affect fine motor skills. I can't feel pills either and really have to watch what I'm doing when I fill my weekly pill dispenser. The bigger frustration is trying to turn pages in a book, magazine, newspaper or anything with more than one page. It seems like a simple task, but not for me. All my fingers including my thumb quiver when I bend them so when trying to pick up something small it tends to flip out of my hand. Makes me feel silly.

@californiazebra - Told my wife what I posted about the pills. Last night, she got a dish towel, and I dumped my pills on the towel. They won't roll around as much...might have solved a pill rolling problem with an easy solution. Try filling dispenser first from towel. Yes, turning pages especially magazines and thin paper an issue. Fine motor skills, small screws, etc an issue when I try to fix things. Magnetic screw drivers helpful. And I wear a lot of 3 button pull over golf shirts, so I don't have to deal with buttons! Don't feel silly, you are not alone with this.

All good tips. Thank you. My son inherited my rare form of neuropathy and has struggled with buttons his whole life.

@californiazebra - Sorry to hear your son has this as well. We face challenges with PN but we need to remain stronger than the effects of this disease. We need to figure it out as we go. Stay positive!