Neuropathy Symptoms but No Pain

Posted by pah17 @pah17, Nov 27, 2023

I've been experiencing numbness and tingling in my feet and calves for about a year. I've had a full work up, including negative EMG. The neurologist said that I could have a skin biopsy to R/O small fiber neuropathy but regardless of the results; i.e., positive/negative the treatment would be the same. She prescribed Gabapentin which I've been taking for a week or so. I think it helps me to sleep better than my usual tossing & turning, but now I feel like my symptoms are more pronounced and I get cramps in my feet and calves more often. She also recommended PT to help with my gait since I constantly feel like my socks are wadded up in my shoes or that I'm walking on pebbles. But I won't be able to start that until December.
Has anyone had a similar outcome with Gabapentin? Treatment for neuropathy seems to focus on pain which I don't have. It's more of constant discomfor.t

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@njed

Due to drop foot, I was prescribed AFO's which not only help a tremendous amount with drop foot but as an added benefit, they provide me much improved balance. Without them on, most times, need a cane even for short distances. With them on, no cane needed. Might not be for everyone but worthwhile getting an opinion. My diagnosis is idiopathic axonal sensorimotor PN, no pain, all numbness, now 6 years and close to 7 years. My suggestion, keep moving.

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Thank you very much.

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@ray666

Hello, pah17 (@pah17)

I'm in the same boat, although I did get a positive EMG: axonal sensorimotor PN, balance and walking grief, but no pain. There doesn't seem to be much anyone can do. My neurologist has suggested I try a medicinal food called EB-N5, which I've been on now for 150 days. I can't say that my PN has improved, although I can say it hasn't gotten any worse. Other than the EB-N5, I'm diligent about maintaining and/or improving my leg strength (stationary cycling); and also, sticking to a daily balance routine.

I wish you lots of success in getting all the relief you can. This can be a frustrating business, I know.

Cheers!
Ray (@ray666)

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Ray, did you try Gapapentin? It's weird because at night it seems to exacerbate my symptoms but during the day, they seem marginally better. I've been on 100 mg at night for a little more than 2 weeks. In addition the last two nights, leg and foot cramps have increased. The weather is cold at night and we haven't as yet turned on the heat here in Southern California.
Do leg cramps go hand-in-hand with neuropathy, do you know? And do cold temps affect things more?

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@pah17

Ray, did you try Gapapentin? It's weird because at night it seems to exacerbate my symptoms but during the day, they seem marginally better. I've been on 100 mg at night for a little more than 2 weeks. In addition the last two nights, leg and foot cramps have increased. The weather is cold at night and we haven't as yet turned on the heat here in Southern California.
Do leg cramps go hand-in-hand with neuropathy, do you know? And do cold temps affect things more?

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Good morning, pah17 (@pah17)

Gabapentin has never come up in conversations with my doctors. I supposed I could have asked, and still may, but I'm left with the conclusion that my doctors don't think that Gabapentin is the proper medication for me. Drilling down a bit more, I wonder if they've never mentioned Gabapentin because pain is not one of my PN symptoms; poor balance and poor gait are––poor, and sometimes I think getting poorer. Like so many of us, I keep looking for "triggers"––What sets off an exceptionally difficult episode of my particular brand of PN? I've never managed to identify a "trigger" that survives repeated scrutiny. For the longest time, I believed that my "exceptionally difficult" episodes were set off by dark vs. light (sunrise, twilight, half-lighted rooms, etc.). I'm no longer so sure. But I keep looking––What is that trigger?

As far as cramps going hand-in-hand with neuropathy… I'm sure it's possible, but so far cramps have not been part of my PN experience, nor has cold vs. warm temps. I'm sure others will post on this, and I will read what they say with great interest.

Ray (@ray666)

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@ray666

Good morning, pah17 (@pah17)

Gabapentin has never come up in conversations with my doctors. I supposed I could have asked, and still may, but I'm left with the conclusion that my doctors don't think that Gabapentin is the proper medication for me. Drilling down a bit more, I wonder if they've never mentioned Gabapentin because pain is not one of my PN symptoms; poor balance and poor gait are––poor, and sometimes I think getting poorer. Like so many of us, I keep looking for "triggers"––What sets off an exceptionally difficult episode of my particular brand of PN? I've never managed to identify a "trigger" that survives repeated scrutiny. For the longest time, I believed that my "exceptionally difficult" episodes were set off by dark vs. light (sunrise, twilight, half-lighted rooms, etc.). I'm no longer so sure. But I keep looking––What is that trigger?

As far as cramps going hand-in-hand with neuropathy… I'm sure it's possible, but so far cramps have not been part of my PN experience, nor has cold vs. warm temps. I'm sure others will post on this, and I will read what they say with great interest.

Ray (@ray666)

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Ray…you are likely correct regarding lack of light and the negative affect on your balance. The vestibular system controlling balance is made up of 3 components…your inner ear mechanisms, your eyes and nerves in your feet. These all work in conjunction to keep you upright. When part of the system is damaged , the others try and compensate. In many cases , the eyes work overtime to try and offset the other deficits. As the light fades, the eyes can’t help as much…and the balance falters more. I think this is why it’s harder to stand with your feet together with eyes closed than when open.

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@stallen

Ray…you are likely correct regarding lack of light and the negative affect on your balance. The vestibular system controlling balance is made up of 3 components…your inner ear mechanisms, your eyes and nerves in your feet. These all work in conjunction to keep you upright. When part of the system is damaged , the others try and compensate. In many cases , the eyes work overtime to try and offset the other deficits. As the light fades, the eyes can’t help as much…and the balance falters more. I think this is why it’s harder to stand with your feet together with eyes closed than when open.

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Good morning, Stallen

That's an excellent review of the three chief causes of poor balance. Mine, I suspect, is largely, if not entirely, nerve damage thanks to my PN. Some years ago, my doctors looked me up and down for possible problems with my inner ear and my eyesight (including the correctness of my eyeglasses); the results: nothing appeared to be contributing to my poor balance. That left damaged nerves, which an EMG in 2022 confirmed. At least, now, I know where I stand. (Pun intended?)

Cheers!
Ray

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Before I was diagnose with Neuropathy I felt like my Recliner Massager was on my body 24x7 did not know what was going on. My feet felt like I had Compression socks on 24x7. I've been on Gabapentin since my 1st Surgery 2002 wasn't sure if it helped or not until lately. I am on 1200MG x2 it has taken care of that Vibration I don't think my Massager is on anymore but I do feel that Tingling more so now. \I haven't been able to take the full 3600MG because it makes me to Lightheaded and Drowsy. I take a lot medication that causes drowsy I have a busy schedule and deal with Necropsy.
i have been dealing with this for years in the the Military but was just diagnosed with Neuropathy in September no one ever came up with neuropathy the pain. Steroids shots never worked, pain medication didn't work I'm talking about High doses Morphine, Vicodin. VA was giving me all kinds of pain medication

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I have had neuropathy in my feet and tingling in my feet and legs for years. My daughter, a registered dietitian found research on non celliac gluten sensitivity that can cause neuropathy and ataxia ( a condition of the cerebellum). I also had shaky hands. I have been strictly gluten free now for over 2 years and the tingling in my feet and legs has greatly diminished. The shakiness in my hands is much less.
Now if I have a very minor exposure to gluten, I experience severe tingling in my feet and legs. The neuropathy is somewhat less now but probably will not go away. My shakiness is almost gone.
I have explained this to several doctors with out response.
We are all different in our responses to the variables in our lives, but this has been a very beneficial approach in my case.
There is information available on non celliac gluten sensitivity (NCGS) from the national institute of health and various other sources.

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