Lots of different sensations - Is this Neuropathy?

Posted by krisss @krisss, Oct 21 9:14pm

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.

Liked by sunnyflower

I don't know what kind of pain management you are using but my neurologist prescribed gabapentin for me. 600 mg 3 times day. Sometimes I take 25 mg tramadol for breakthrough pain. I live a very sedentary lifestyle and for the most part I have not been exercising. I do very little housework now because of pain and severe osteoporosis. If I overdo exercise or housework I may have pretty bad pain but the tramadol kicks in pretty quickly. The big problem for me is that I can hardly bear to wear shoes and I am limited in how far or how long I can walk. I say all this to you to give you an idea of how you may manage your pain if you choose to. We are all different but I can't imagine how tramadol and gabapentin would not relieve a lot if not most of your pain. I wish you well and hope you find relief soon.

Liked by krisss

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@krisss
Yes, my wife who has had neuropathy in her feet and ankles for 6 years gets random stabbing pains, very painful. If she were awake I'd ask her to refresh my memory about how she would describes them generally. I do know they are very painful, she sometimes describes them as going from one place to another (like feet up to chest for example) and they come without any warning. She is in agony for a minute and then it's gone. Sometimes she will get 2 or 3 in a row. So for her, yes, this is normal, i.e. part of neuropathy, in our opinion. Because I am not with her all the time and I can't ask her right now, I am not sure on average how often they occur. Probably once or twice a week, sometimes more, I suppose.

How long have you had peripheral neuropathy? Do you or your doctors have any idea what caused it? My wife's was from chemotherapy in 2014.

Best, Hank

Liked by krisss

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@krisss That's exactly how my pain is. Random. I still can't understand why it is all over the body. I can't tolerate many drugs so take half a low dose hydrocodone three times a day, sometimes four.

Liked by lorirenee1, krisss

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Hello @krisss, I would like to add my welcome to Connect along with the other members. You will notice we changed the title of your discussion to better describe your question and purpose of the discussion. Here are a few other discussions that you may find helpful:

– Living with Neuropathy – Welcome to the group: https://connect.mayoclinic.org/discussion/living-with-neuropathy-welcome-to-the-group/
– Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/

Another good source of information for neuropathy is the Neuropathy Commons website – https://neuropathycommons.org/

Have you seen a neurologist for a diagnosis or had any specific tests for neuropathy?

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@jesfactsmon

@krisss
Yes, my wife who has had neuropathy in her feet and ankles for 6 years gets random stabbing pains, very painful. If she were awake I'd ask her to refresh my memory about how she would describes them generally. I do know they are very painful, she sometimes describes them as going from one place to another (like feet up to chest for example) and they come without any warning. She is in agony for a minute and then it's gone. Sometimes she will get 2 or 3 in a row. So for her, yes, this is normal, i.e. part of neuropathy, in our opinion. Because I am not with her all the time and I can't ask her right now, I am not sure on average how often they occur. Probably once or twice a week, sometimes more, I suppose.

How long have you had peripheral neuropathy? Do you or your doctors have any idea what caused it? My wife's was from chemotherapy in 2014.

Best, Hank

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Thank you for the information. I thought it might be something else. I have had this for over 10 years and have had all the testing but the doctors don't know the cause. I think it's from my degenerative disk disease but am unsure. The numbness and tingling is not too bothersome but those stabbing pains are. It's so hard to get anything for the pain as it is not constant, the doctors won't give me anything. I tried the gabapentin but it didn't help at all. I take a supplement called alpha lipoic acid and I take folic acid. Those do help with the other symptoms but do nothing for the stabbing pain. My doctor just put me on Amitriptyline for that but wow does it knock me out. I take it at bed time and sleep all night! I was just wanting to know if those stabbing pains were really from the neuropathy and thanks for that!

Liked by lorirenee1

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I had the same sensations, @krisss .. Amitryptiline gave me nightmares so that's it for that. I just take half a hydrocodone 325. about three times a day and that helps a LOT. Nothing else did. I take so little that the doctor does not mind. You have to get a pain doctor possibly not your regular PCP.

Liked by krisss

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@krisss, Since you mentioned you think it might be from degenerative disk disease there is another discussion you might want to take a close look at…

Myofascial Release Therapy (MFR) for treating compression and pain: https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

@artscaping and @jenniferhunter may have some thoughts or suggestions to help with your pain.

Liked by krisss

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@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

Liked by Hank, sunnyflower, krisss

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@jesfactsmon

@krisss
Yes, my wife who has had neuropathy in her feet and ankles for 6 years gets random stabbing pains, very painful. If she were awake I'd ask her to refresh my memory about how she would describes them generally. I do know they are very painful, she sometimes describes them as going from one place to another (like feet up to chest for example) and they come without any warning. She is in agony for a minute and then it's gone. Sometimes she will get 2 or 3 in a row. So for her, yes, this is normal, i.e. part of neuropathy, in our opinion. Because I am not with her all the time and I can't ask her right now, I am not sure on average how often they occur. Probably once or twice a week, sometimes more, I suppose.

How long have you had peripheral neuropathy? Do you or your doctors have any idea what caused it? My wife's was from chemotherapy in 2014.

Best, Hank

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@jesfactsmon Hank the post from rhemapaincenter didn't go to Colleen I sent her a p.m. as I had 25 online

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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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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.

Liked by Hank, sunnyflower

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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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@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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@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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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

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.

Liked by Hank

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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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