Lots of different sensations - Is this Neuropathy?

Posted by krisss @krisss, Oct 21, 2020

Hi, I don't have diabetes but do suffer from neuropathy in both hands and both feet. I get lots of different sensations… heat, cold, tingling, buzzing and the like but I also get terrible stabbing nerve pains like a hot poker or knife straight to the bone. They come without warning and cause me to scream in agony. I've explained this to my doctors but they tell me it's just another part of the neuropathy. Is this true? Do you guys get these terrible pains too? Usually they are in my feet but I do get them in other parts of my body. It's like someone with a voodoo doll is sticking pins in lol.

@krisss

They happen usually in the evenings. Sometimes I can go a couple days without having any but most times it's every day. They seem to happen different places every day but the same place over and over on that day if you understand what I'm saying. I'll get a pain and it'll last for 10 seconds to a minute then it'll be gone. Then it will come back a few seconds later and happen over and over a dozen or more times. The next day it will happen in a different place.

Tell me more about these new pills and reasons I should not take them please. I have had two heart attacks and am not able to take most common medicines. Should I be worried about this new medicine? What should I watch for? I haven't had the chance to run these new pills past my regular doctor but I did ask my cardiologist if they were safe for me to take before I started. I have only taken two doses so far. I will say that I have not had a single pain since I took the first dose. But, as I said, I can go a couple days without any pains once in a while so it's still too early to say if they are working.

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@krisss
What you are describing is worse than my wife's situation vis-a-vis the sudden stabbing pains. For one thing, you describe yours as a red hot poker kind of feeling. Hers is more like a long thick sharp needle or an ice pick being shoved in at various places. When they happen it's usually not more than 2 or 3 times over a period of, say, an hour or so and then maybe not again that day. She says they usually come in clusters over a given period of several days to a week, and then she might go a week or two or three without any. It's VERY random in terms of when they happen and where they happen on her body.

For you this sounds more untenable as far as just living with it if it's possible to do something to calm it or stop it altogether. If you are able to tolerate the Amitriptyline, that's great. Sounds like you need to see how it goes and see how these pains do while using the drug. I do see there are some issues with this drug and heart issues. Did your cardiologist say anything about that?

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You know how it goes trying to talk to your specialist. I left a message and his nurse responded saying it was ok for me to take it. It's been 3 doses now and I did feel two pains last night they were extremely mild. I must say… so far so good. I seem to sleep like a rock as well and that's a bonus as I have sleep apnea and insomnia as well. I just feel groggy in the morning.

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@krisss

You know how it goes trying to talk to your specialist. I left a message and his nurse responded saying it was ok for me to take it. It's been 3 doses now and I did feel two pains last night they were extremely mild. I must say… so far so good. I seem to sleep like a rock as well and that's a bonus as I have sleep apnea and insomnia as well. I just feel groggy in the morning.

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@krisss
Well I hope it continues to help you. You might want to read online yourself about cardiac related issues with Amitriptyline.

By the way, my wife had sleep apnea for most of our marriage (no cpap, just terrible breathing for years). Last year she got a foam wedge to sleep on which elevates her upper body (she sleeps on her back, otherwise this would not work so good). It rises about 6 inches and has completely eliminated her apnea. Just FYI in case it's of any interest.

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@lorirenee1

@krisss Hi there, as a fellow Neuropathy sufferer, I would say that all you are describing is Neuropathy! I too, have what you describe. The damn sensory nerves do all kinds of weird things, and some are intensely painful. Symptoms range from bothersome, to horrific pain. My symptoms are mostly horrific pain, but I have a bunch of odd things like feeling my feet are soaking wet, when dry, feeling like my toes are crossed, when straight, etc. Horrible illness. Just horrible. Lori Renee

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Ditto. Twins. Head to toe, pain; sting/burn/paresthesias/numb, loss of several body functions, eye probs, so many body parts involved.

@krisss, I know you will find wonderful support, encouragement and inspiration here.

Hang in. Many blessings, Sunnyflower 🌹

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Kriss @krisss, my heart is so heavy reading about your suffering. I can relate.
The only and sole thing that gets me through is my intimate relationship with God. I experience His ever-presence, comfort and peace through Christ which surpasses human understanding, and His deep, vast, boundless, sacrificial, unmerrited, free and unfathomable love daily.

I know Him well enough to trust Him in my circumstances and I know that He has a higher purpose in my suffering as confirmed by many Bible verses.

I wish and pray the same for you and ask Him for relief for you. Take good care of yourself, Sunny flower

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@krisss

The pain is like a red hot poker going straight to the bone! The funny thing is I stood on a hot coal that fell out of the grill (wearing only socks) and never felt a thing and wouldn't have even noticed if my sock hadn't started on fire. I had a huge blister but never felt anything.

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Oh dear, reminds me of when I met my husband and the blood spots on his carpet. He never knew or felt when these injuries happened nor could he see them bc he is color-blind. His skin on the soles of his feet got burned in a tanning bed (he was much younger) and the only way he knew was that he could smell his flesh burning! EEeewwww!
Insulin dependent diabetic since age 12.

I am truly sorry for your suffering and painful journey. Hang in, we all care about you very much.

Many blessings, Sunnyflower

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@jesfactsmon

@krisss
Amitriptyline is a fairly heavy duty drug. I am wondering how many times do you experience these unexpected stabbing hot poker pains in a day or week? And does the Amitriptyline keep them from happening? If not, and as disconcerting as the pains are (and I am not minimizing the probably horrible effect on you) I am just wondering if you absolutely need the Amitriptyline, especially if it does not eliminate the episodes for the most part. Is there some way you could manage to just live with these pains, at least until you find a more acceptable solution? It really depends on how often they occur, and how severe an individual episode is when it happens, I guess.

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For some strange reason, Extra Strength Tylenol works for the shooting electric pains for my husband. Amitriptyline did too when he was on it back in the day.
All the best, Sunnyflower @krisss

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