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.

Interested in more discussions like this? Go to the Neuropathy Support Group.

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.

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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

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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.

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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!

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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.

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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.

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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

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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.

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