Internal vibrations/crawling

I'm working on it. My father went there. I know I inherited his genes. Yes indeed I did. I live in MICHIGAN but I have family in AZ. Right by the Mayo clinic there. I can't find a good doctor here. It's impossible.

I had to get b12 shots for some time. I don't know if that has anything to do with it? Thank you.

Praying for you. At the start of my journey, it was the extreme heat and cold that my extremities kept switching back and forth between that made me most miserable, and it had nothing to do with the temperature outside, it was all neuropathy doing this too me. At the nursing home for rehab (I was 52) my favorite night nurse would come lift me to the bathroom, and always playfully laugh at me that I’d be stark naked but sometimes wearing a pair of gloves. Who ever knew how much pain cold feeling feet and hands causes, and how hopeless you feel when you’re burning up (though for me, not sweating) and cold water can’t put it out! Gabapentin eventually kicked in for me to greatly control the severeness, but it took a good 2 months of gradually increasing to the best dosage to help. I still have extremes; low and high temps bother me, so I stay dressed as needed, keeping a jacket and gloves with me, even in summer, for places with ridiculous air conditioning. I take lukewarm showers… I let the dish water cool down from soaking dishes before I put my hands in to wash them. But Gabapentin has been a huge help. I know it doesn’t work for everyone, but if you decide to give it more time, I hope and pray you find relief! Hugs

Did you ever smoke cigarettes? My tolerates for heat and cold is unbearable. Nothing helps the pain. I am jerking and wail liking wobbly. Will this go away.

My heart is racing and I take everything I can it effects my eyes and stomach

No, I was fortunate enough to never smoke, but I lived and worked in it growing up, as we didn’t talk or know about dangers of second hand smoke back then. My neuropathy most likely won’t go away, as it is idiopathic PN, and like mist on here, don’t see a cure but want to manage our symptoms, be more comfortable, get as strong as possible, and live lives to our fullest & most enjoyable. One common theme here is that there’s no one remedy that works for all, so there’s trial and error, and finding your right medical support at home. A lot of people have ideas here, so please keep reading. The unbearable non-stop heat and cold extreme era passed for me about 5 years ago. Hang in there while getting through that, praying for you!

Have you tried L Theanine?

I understand! Healthcare is hard to maneuver. I hope all goes well.

TO Debbie - you hit the nail on the head on two points. First, manage the symptoms and that to me is key. I've been dealing with idiopathic sensorimotor PN for 6 years and every day I fight to keep my balance and work with the severe numbness. It is not easy at all! Second point you made is to enjoy our lives and I am determined to do just that. At times, it does get to me. But, I have made a decision early on with my dx to fight on and live life to the fullest which my wife and I do. We just say OK, how can we do this....and we do it. Got to remain positive. Ed

Well John, I wonder if you have any ideas for me to try. I’ve responded here few times about my internal Vibrations. I’ve had them daily since Sept of 2020. Starting in my left foot and moving up to my knee then bam the other leg all way up to my upper waist area in just 2 months. I’ve had them faithfully for 3 yrs 4months now. Neurologist or my Neurosurgeon can’t figure it out. They say it’s spinal or a brain issue. I’ve had numerous MRI’s and CT scans n only thing they see is a cyst in my mid upper spine that could be preventing fluid from flowing through normally. It’s like a motor in my body 24/7. I wake up to it and I go to sleep with it. I try to figure ways to explain vibration, to a bubbling pot at my feet and I can feel the boiling like water rush through my body. But I don’t feel that water sorry, it’s just the motion I’m feeling from it. I’m sitting on this and can’t get cozy and I’m not able to even enjoy the vibration. This is miserable. My Dr just did another complete BW on me and I’m good cept for my Thyroid is still not balanced. So lowering dosage again. Got so low I lost a lot of hair. I lost well over 100 pds. My body feels like I’m racing but not getting anywhere. I’ve cried so many times on my family. Had brain scans. What us this vibration from? Why can’t Drs around here or an hour away like U of M hosp. Figure out what’s causing this ? I know I’m not the only one, I see many on here complaining of the same problem. I wasn’t doing anything when all this started. I was going to a Dr appt and started feeling it in my foot. I have had a spinal cord Stimulator before. I had it for RSD reasons put in 2007 and removed in May 21’. To me it’s the same vibration as having the stimulator still in me turned on full blast. Now if you or anyone you know has one of these then you know the same vibrations I’m talking about. My husband I know is tired of me whining about this, after all it’s been over 3 years now n nothing has been done to stop it. I just need some little hope that someone else having this and was cured or going through being on the right track. I need a little hope. I can’t deal with this any longer. I can’t do this anymore. Who is there can help get rid of these ? It’s same feeling from bottom of my feet to my upper waist. It’s a miserable life. Please send some encouragement my way. Thanks and God bless our Country!