Hello @ahendershot, welcome to Connect. I also have idiopathic small fiber peripheral neuropathy but have had it 20+ years. Mine is mostly numbness in my feet and just above the ankles. This past winter while clearing snow I stayed out a little longer than I should have and even though I had good gloves on my hands got very cold and as a result it feels like I have the start of neuropathy in the tips of a few fingers on my left hand or it's a result of frostbite.
Hello @ahendershot, welcome to Connect. I also have idiopathic small fiber peripheral neuropathy but have had it 20+ years. Mine is mostly numbness in my feet and just above the ankles. This past winter while clearing snow I stayed out a little longer than I should have and even though I had good gloves on my hands got very cold and as a result it feels like I have the start of neuropathy in the tips of a few fingers on my left hand or it's a result of frostbite.
Hi John,
I do have pain from my foot and my hand that is non-stop. I feel pinching, stabbing, burning, “frostbite”, and numbness that causes a deep cramp to ride up my leg and arm. I’m ramping up my dose of gabapentin but it has not helped a lot yet. I’m currently at 900mg a day. My anesthetic creme still works ok on my foot, but I still have trouble sleeping because it is not as effective on my hand.
Thanks for the additional information on your management of neuropathy. I’ll be sure to go through it.
Andrew
Hi Margot,
I did not have foot drop issues on my right foot. The pain started in the tips of my first three toes and quickly setteled in the ball of my foot around those same toes. At first, walking helped alleviate the pain and sitting or lying down made it much worse. Now it on 24/7 and I have bearable days and miserable days, and mostly miserable nights.
Andrew
Hi John,
I do have pain from my foot and my hand that is non-stop. I feel pinching, stabbing, burning, “frostbite”, and numbness that causes a deep cramp to ride up my leg and arm. I’m ramping up my dose of gabapentin but it has not helped a lot yet. I’m currently at 900mg a day. My anesthetic creme still works ok on my foot, but I still have trouble sleeping because it is not as effective on my hand.
Thanks for the additional information on your management of neuropathy. I’ll be sure to go through it.
Andrew
@ahendershot, @johnbishop, Good morning to you and I would like to add my welcome. I recognize the place where you are now residing. And I hear you wondering, "what's next". I just have a couple of questions. Are you taking all 900 mg of gabapentin at night? I have found that a 900 mg dosage taken at 8:30 pm or no later than 9:30 pm will help with the tingling in the hands during the night. You might even get a couple of pretty painless hours in the morning....enough to do morning chores.
For the needles in your hands (also known as pin cushions)....have you tried any other topicals? I experimented with essential oils...e.g. copaiba and deep blue together, and a prescription lidocaine cream with other pain reducing additives. Both options served to take the edge off and lingered for an hour or so. My real solution came in the form of Papa & Barkley 3:1 CBD/THC Releaf Balm if you can find it where you live. My life partner also uses it on his 72-year-old knee and ankle that have suffered a bit with this year's heavy snow. Please let me know how I might be helpful. And may you have a pain free day or even an hour. Chris
@ahendershot, @johnbishop, Good morning to you and I would like to add my welcome. I recognize the place where you are now residing. And I hear you wondering, "what's next". I just have a couple of questions. Are you taking all 900 mg of gabapentin at night? I have found that a 900 mg dosage taken at 8:30 pm or no later than 9:30 pm will help with the tingling in the hands during the night. You might even get a couple of pretty painless hours in the morning....enough to do morning chores.
For the needles in your hands (also known as pin cushions)....have you tried any other topicals? I experimented with essential oils...e.g. copaiba and deep blue together, and a prescription lidocaine cream with other pain reducing additives. Both options served to take the edge off and lingered for an hour or so. My real solution came in the form of Papa & Barkley 3:1 CBD/THC Releaf Balm if you can find it where you live. My life partner also uses it on his 72-year-old knee and ankle that have suffered a bit with this year's heavy snow. Please let me know how I might be helpful. And may you have a pain free day or even an hour. Chris
Hi Chris,
Thanks for the support and great information! I’ll see what I can find locally, and beyond.
I take the 900mg in 300mg capsules, morning, noon, and night. From what I have been finding online, that dosage is fairly small. I told my neurologist that I would try it a good two weeks, as he wished, before calling in to ask for a higher dosage. I would rather take all or most of whatever dosage I find that works, just before bed, as you suggest. Sleeping is definitely something I took for granted. That humbles me in a big way.
Andrew
Hi Chris,
Thanks for the support and great information! I’ll see what I can find locally, and beyond.
I take the 900mg in 300mg capsules, morning, noon, and night. From what I have been finding online, that dosage is fairly small. I told my neurologist that I would try it a good two weeks, as he wished, before calling in to ask for a higher dosage. I would rather take all or most of whatever dosage I find that works, just before bed, as you suggest. Sleeping is definitely something I took for granted. That humbles me in a big way.
Andrew
@ahendershot I've never found Gabapentin effective for pain relief, but it does help me sleep...if I don't mind being groggy for half the day following. For sleep, try 800 mg some 30 to 60 minutes before bedtime.
I think the top mg for gabapentine is 3600 -- 3 x a day -- I know of several who take 2400 a day, but you need to work up to that very carefully and in small increments -- hope it works for you without the side effects
No one actually told me those things. I just put it together because of my experience at the chiropractor. I had an appt. to see a neurologist because the PN was spreading and worsening. In the meantime I was trying a new chiropractor and he did that scraping on my calves. He had a hunch it would help the PN, which it did incredibly. Some has returned but I will ask him to do it again. My PN really does seem to be from those tight muscles, although I have also had some in my elbows from leaning on them too long!? Because of the disappearance of symptoms, I canceled my appt. with the neurologist.
No one actually told me those things. I just put it together because of my experience at the chiropractor. I had an appt. to see a neurologist because the PN was spreading and worsening. In the meantime I was trying a new chiropractor and he did that scraping on my calves. He had a hunch it would help the PN, which it did incredibly. Some has returned but I will ask him to do it again. My PN really does seem to be from those tight muscles, although I have also had some in my elbows from leaning on them too long!? Because of the disappearance of symptoms, I canceled my appt. with the neurologist.
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Hello @ahendershot, welcome to Connect. I also have idiopathic small fiber peripheral neuropathy but have had it 20+ years. Mine is mostly numbness in my feet and just above the ankles. This past winter while clearing snow I stayed out a little longer than I should have and even though I had good gloves on my hands got very cold and as a result it feels like I have the start of neuropathy in the tips of a few fingers on my left hand or it's a result of frostbite.
Do you have pain with your neuropathy? I don't have any pain from it but I take supplements which has slowed the progression of the neuropathy. I posted what helps me earlier on Connect here: https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=42#comment-65985
John
Andrew... do you have any foot drop? Interesting that your neurologist didn't connect the Shingles with onset of neuropathy.
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1 ReactionHi John,
I do have pain from my foot and my hand that is non-stop. I feel pinching, stabbing, burning, “frostbite”, and numbness that causes a deep cramp to ride up my leg and arm. I’m ramping up my dose of gabapentin but it has not helped a lot yet. I’m currently at 900mg a day. My anesthetic creme still works ok on my foot, but I still have trouble sleeping because it is not as effective on my hand.
Thanks for the additional information on your management of neuropathy. I’ll be sure to go through it.
Andrew
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2 ReactionsHi Margot,
I did not have foot drop issues on my right foot. The pain started in the tips of my first three toes and quickly setteled in the ball of my foot around those same toes. At first, walking helped alleviate the pain and sitting or lying down made it much worse. Now it on 24/7 and I have bearable days and miserable days, and mostly miserable nights.
Andrew
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1 Reaction@ahendershot, @johnbishop, Good morning to you and I would like to add my welcome. I recognize the place where you are now residing. And I hear you wondering, "what's next". I just have a couple of questions. Are you taking all 900 mg of gabapentin at night? I have found that a 900 mg dosage taken at 8:30 pm or no later than 9:30 pm will help with the tingling in the hands during the night. You might even get a couple of pretty painless hours in the morning....enough to do morning chores.
For the needles in your hands (also known as pin cushions)....have you tried any other topicals? I experimented with essential oils...e.g. copaiba and deep blue together, and a prescription lidocaine cream with other pain reducing additives. Both options served to take the edge off and lingered for an hour or so. My real solution came in the form of Papa & Barkley 3:1 CBD/THC Releaf Balm if you can find it where you live. My life partner also uses it on his 72-year-old knee and ankle that have suffered a bit with this year's heavy snow. Please let me know how I might be helpful. And may you have a pain free day or even an hour. Chris
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1 ReactionHi Chris,
Thanks for the support and great information! I’ll see what I can find locally, and beyond.
I take the 900mg in 300mg capsules, morning, noon, and night. From what I have been finding online, that dosage is fairly small. I told my neurologist that I would try it a good two weeks, as he wished, before calling in to ask for a higher dosage. I would rather take all or most of whatever dosage I find that works, just before bed, as you suggest. Sleeping is definitely something I took for granted. That humbles me in a big way.
Andrew
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2 Reactions@ahendershot I've never found Gabapentin effective for pain relief, but it does help me sleep...if I don't mind being groggy for half the day following. For sleep, try 800 mg some 30 to 60 minutes before bedtime.
I think the top mg for gabapentine is 3600 -- 3 x a day -- I know of several who take 2400 a day, but you need to work up to that very carefully and in small increments -- hope it works for you without the side effects
No one actually told me those things. I just put it together because of my experience at the chiropractor. I had an appt. to see a neurologist because the PN was spreading and worsening. In the meantime I was trying a new chiropractor and he did that scraping on my calves. He had a hunch it would help the PN, which it did incredibly. Some has returned but I will ask him to do it again. My PN really does seem to be from those tight muscles, although I have also had some in my elbows from leaning on them too long!? Because of the disappearance of symptoms, I canceled my appt. with the neurologist.
@julchilds Here is a discussion you might find helpful. Any tight place in your body can affect the nerves passing through those areas. Myofascial Release is a type of physical therapy that can help. I do a lot of MFR work with my therapist and it has many benefits. https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/
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