PN giving me terrible tingling and electrical currents head to toe st

Hi there - thanks for your response. I'm stubborn and hate taking all the medications I'm already on for other nuisances. So for now an extra gabapentin at night when I'm uncomfortable is enough to send me off to sleep so I don't notice that I'm being electrocuted! I suspect I'll need to go on regular dosing soon enough, but I'd like to avoid it for as long as I can. I stay really busy during the day so I don't notice the sensations until I settle down at night to try to sleep.

I hate to take meds too, but it's the only thing can get me through the day without succumbing to fear and despair. In a 24 hour period, I may have to take flexeril for chronic muscle spasm in my neck/shoulders, norco for generalized pain and gabapentin for nerve pain. I have had several MRIs done, emg/ncs test, all kinds of blood and urine labs done - all come back normal. I think the neurologist took me seriously, but his effort to refer me to UCSF was declined because of my insurance. He did say that gapapentin is safe and people can take up to 3600 mg a day!! He also said that you take it every day, not just as needed. So I take 900 mg every night, but it's only masking the electric shock sensation coursing through my body 24/7. I'm 64 and have been able to stay off meds for the most part, until now. And now I feel like a junkie. I hate to think what it might be doing to my kidneys and liver over the long term, but I also wonder how long I may survive with whatever is going on in my body, that the doctors can't seem to diagnose and treat. It's so frustrating.

7 years!!?? I can't imagine. I commend you for your fortitude. If some doctor could crack the cause of this...reading how many people here on this board are trying to cope with chronic pain and what goes along with that. Worst thing is when doctors imply that it's psychological.

I’m curious to ask the people who complain of the “shooting nerve pain” throughout your body or especially when you sleep? How many of you have a daily home exercise program that you follow and how many of you stretch before you go to bed?
I have found when I do not stretch and do not 1/2 of my exercise regime before I go to bed I experience the same thing. I can stop it though by getting out of bed and doing my routine. I’m very fatigues at bedtime but have found I’m worse off if I don’t follow my regime. How many of you do the same?

Interestingly, my symptoms started around the time that I was eating very well, losing weight (was't overweight to begin with) taking supplements and exercising regularly. I just returned from a 3 mile fast walk. I make myself do as much as I can to prove to my nervous system that my body is still capable. But my hands shake even now as I write this and my muscle tone - even in my face - has gone slack. I am a young 64 year old, who up until this year, could hike steep climbs, rode 50 miles on bike, swam across lakes, did hot yoga, etc. Trust me, if this was something could be overcome with stretching and exercise, I wouldn't be feeling this way.

Thank you for the response. I hope you’ve had a complete metabolic blood work up performed to check for low numbers? Sounds like he’ll you’re going thru. You mentioned your arm shaking as your type which made me think of low magnesium, which shows up when muscle tension is attempted. I hope you get closer to a solution?

Don’t think that’s stubborn. If you can avoid drugs it’s always best. I’m trying to take as little as possible. I’m grateful that I don’t have a bunch of other maintenance meds I have to take. Have you figured out what is causing your symptoms?

Hi, I am a new member and appreciate all the comments on PN. My neuropathy has been progressively becoming worse for the last several years. My neurologists has ruled out all possible causes and I'm left with the diagnosis of cryptogenic peripheral polyneuropathy. Recently, I read that statin drugs for cholesterol can contribute to PN. Has anyone experienced benefits from stopping their anti-cholesterol medication?

Welcome @marganian1, There is another discussion you might find helpful:
--- Statin discontinued due to neuropathy. What are some alternatives?: https://connect.mayoclinic.org/discussion/discontinuation-of-statin/.

I also have idiopathic small fiber peripheral neuropathy but have never been on a statin for cholesterol. My doctor did want me to start them several years ago but I chose to try and reduce my cholesterol numbers without taking a statin because I already had neuropathy and was hoping not to make it worse. I don't think it's a good idea to stop taking the anti-cholesterol medication without discussing it with your doctor and looking for an alternative.

How long have you been taking the anti-cholesterol medication?

I've been on statins for about 8 years. I began symptoms of PN around that time. I also have L5-S1 spinal stenosis and initially thought that it was the cause of my symptoms. But because I am able to walk (for several blocks) and my feet symptoms are similar bilaterally, my neurologist attributed these symptoms to PN and not to spinal cord narrowing. I was ready to undergo back surgery to relieve my symptoms but now I have abandoned that plan.