Anyone here dealing with peripheral neuropathy?

Posted by rabbit10 @rabbit10, Apr 9, 2016

Anyone here dealing with peripheral neuropathy?

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

@suely10

Yes, I do. After undergoing chemotherapy I developed peripheral neuropathy in my feet fingers. It happened two years ago and persists up to now.

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I have planters fascilitis surgery in both feet can it re appear? because along with the pain, tingling, cold, burning of my feet I have incredibly painful cramping.

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@aliskahan

Hi @rabbit10 and welcome to Connect! I want to connect you with @martid, and @grandma41 who have both recently written about peripheral neuropathy. They both had different causes of their diagnosis and can discuss their experiences with you.

How long have you been dealing with peripheral neuropathy?

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I take these also and my pain is tolerable

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@johnwburns

I have been dealing with peripheral neuropathy for almost 20 years but it has kicked up significantly in the last 3. I also have autonomic neuropathy, both due to Sjogren's syndrome.  I take gabapentin and duloxetine but pain isn't the worst problem, numbness is in my case. I have been seeing rheumatologists for this but I get an opinion from a neurologist in a few days. Highly unlikely that anything can be done about either form of neuropathy. Hopefully you'll have better luck with the chemo induced version.

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@martid Like you, my PN is in my feet. I have the same stuff going on as your hands, only in my feet. The outside skin in numb, while the muscles inside sometimes hurt. This makes walking scary. I was taking Gabapentin three times a day but it didn't seem to be doing any good. So with my PCP's okay, I dropped it to 300 mg twice a day. It made no difference. Please post any information that helps you, and good luck. @cognac

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@aliskahan

Hi @rabbit10 and welcome to Connect! I want to connect you with @martid, and @grandma41 who have both recently written about peripheral neuropathy. They both had different causes of their diagnosis and can discuss their experiences with you.

How long have you been dealing with peripheral neuropathy?

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I just watched a video on u-tube The speaker's name is; Anne Louise shes a neuro-scientist (Harvard University) this was very helpful.

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I have a comment/question that may seem silly to some but is very important to me; I have been prescribed Gabapentin (Neurontine) for prevention of PHN (after shingles). After one pill i got very dizzy and started reading up on it. I found it a bit scary to realize that gabapentin is for epileptic and other seizures as well as psychoses. The side effects seem very severe as well. Given that this has been prescribed for me prophylactically, i wonder if the side effects are too severe? I am supposed to take 3x300 for seven days, then 2x300 for seven days, then 1x300 for seven days. Have any of you had this prescription for PHN ? Thank you,
Elisabetha

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I was so surprised to hear others with restless leg syndrome and peripheral neuropathy! I’ve had RLS since I was very young, but peripheral neuropathy is a new and terrible thing for me. I’m 59 and thinking if it’s this bad now....?

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@elisabetha

I have a comment/question that may seem silly to some but is very important to me; I have been prescribed Gabapentin (Neurontine) for prevention of PHN (after shingles). After one pill i got very dizzy and started reading up on it. I found it a bit scary to realize that gabapentin is for epileptic and other seizures as well as psychoses. The side effects seem very severe as well. Given that this has been prescribed for me prophylactically, i wonder if the side effects are too severe? I am supposed to take 3x300 for seven days, then 2x300 for seven days, then 1x300 for seven days. Have any of you had this prescription for PHN ? Thank you,
Elisabetha

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I take three 300 pills in the morning and at night for an active case of PHN with no problem. The evening dose may help me sleep better.

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@julchilds

I was so surprised to hear others with restless leg syndrome and peripheral neuropathy! I’ve had RLS since I was very young, but peripheral neuropathy is a new and terrible thing for me. I’m 59 and thinking if it’s this bad now....?

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I have had RLS and neuropathy, but the RLS mostly went away when I was treated for Obstructive Sleep Apnea. If you felt tired and easily fall asleep when sitting, you might want to ask your doctor about getting tested for sleep apnea. I think my RLS comes from my anxiety-my legs were always moving when I sat. I now have eliminated the benzodiazepene and gotten a medication increase so my anxiety has been reduced to the point where with the sleep apnea treatment I no longer have the anxiety.

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@elisabetha

I have a comment/question that may seem silly to some but is very important to me; I have been prescribed Gabapentin (Neurontine) for prevention of PHN (after shingles). After one pill i got very dizzy and started reading up on it. I found it a bit scary to realize that gabapentin is for epileptic and other seizures as well as psychoses. The side effects seem very severe as well. Given that this has been prescribed for me prophylactically, i wonder if the side effects are too severe? I am supposed to take 3x300 for seven days, then 2x300 for seven days, then 1x300 for seven days. Have any of you had this prescription for PHN ? Thank you,
Elisabetha

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@elisabetha -- I personally have taken Gabapentin (Neurontin) for PHN, postherpetic neuralgia, arising after shingles. I didn't have any problems with the medication at all -- being on it or coming off of it. It really helped the PHN be much more tolerable till it finally went away.

Getting very dizzy is something to take seriously, exactly as you have done with your research on it. I would really suggest you speak to the doctor who prescribed it or one of the nurses in the doctor's office.

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@elisabetha

I have a comment/question that may seem silly to some but is very important to me; I have been prescribed Gabapentin (Neurontine) for prevention of PHN (after shingles). After one pill i got very dizzy and started reading up on it. I found it a bit scary to realize that gabapentin is for epileptic and other seizures as well as psychoses. The side effects seem very severe as well. Given that this has been prescribed for me prophylactically, i wonder if the side effects are too severe? I am supposed to take 3x300 for seven days, then 2x300 for seven days, then 1x300 for seven days. Have any of you had this prescription for PHN ? Thank you,
Elisabetha

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@elisabetha- @lisalucier - you may want to modify dosage and the times that you take the medication. I did not do so well with the first effort and then my neurologist and I did some modifying. Now...I take 900 mg at about 9:30 pm....none in the daytime. He told me that the positive effects could last into the following afternoon. And at that time I use medical grade marijuana, both vape and topical. Just a suggestion to explore.

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