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 group.

@rabbit10

John thanks for your reply. The cause is unknown in my case. But I have constant tingling on legs and arms. Of course it is worse at night when trying to sleep. Sometimes I get a strong pain in my right leg near the knee and one in my thigh. I use a tens machine for the pain but the tingling and numbness doesn’t stop. I also have restless legs and take requip for that along with tramadol. It helps with the rls but no the tingling and numbness.

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I have burning and pins and needles pain in my feet and lower legs. I wear compression socks during the day. I take duloxetine and pregabilin for the pain everyn day. At night (worst time), I take 2 to1 combo 2.5 mg of THC and CBD. It relaxes me and takes the stress off my legs and I get a good 8 hrs. sleep. My Dr. said, "Whatever works."

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@johnbishop

Hi Beth, Sorry to hear you haven't found anything that gives you some relief for your tingling and burning feet. Have you seen the following discussions? Just wondering it others may have shared something that may help you also.

— Burning feet and legs: https://connect.mayoclinic.org/discussion/burning-feet-and-legs/
— neuropathy and burning feet: https://connect.mayoclinic.org/discussion/neuropathy-4/
— Burning Feet syndrome: https://connect.mayoclinic.org/discussion/burning-feet-syndrome/

You may have seen some of the home remedies but they may be helpful if you haven't already tried them.
— 9 home remedies for burning feet: https://www.medicalnewstoday.com/articles/home-remedies-for-burning-feet

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Hi, have you heard of Erythromelagia? Burning of feet, very sensitive to activity & hot weather. My feet turn red red after activity & being in the heat. Only relief so far is soaking only 5 min. In cool water. Not very common apparently .

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@corne

Hi, have you heard of Erythromelagia? Burning of feet, very sensitive to activity & hot weather. My feet turn red red after activity & being in the heat. Only relief so far is soaking only 5 min. In cool water. Not very common apparently .

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Welcome @corne, You are not alone with the burning of the feet. I just have the numbness but there are other members who share your symptoms. Here are a few discussions you might find helpful.

— Erythromelalgia: https://connect.mayoclinic.org/discussion/erythromelalgia/
— Peripheral Neuropathy vs. Erythromelalgia: https://connect.mayoclinic.org/discussion/peripheral-neuropathy-vs-erythromelalgia/
— Erythromelalgia and Myeloproliferative disorders: https://connect.mayoclinic.org/discussion/erythromelalgia-and-myeloproliferative-disorders/

Have you been diagnosed with peripheral neuropathy?

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@johnbishop

Welcome @corne, You are not alone with the burning of the feet. I just have the numbness but there are other members who share your symptoms. Here are a few discussions you might find helpful.

— Erythromelalgia: https://connect.mayoclinic.org/discussion/erythromelalgia/
— Peripheral Neuropathy vs. Erythromelalgia: https://connect.mayoclinic.org/discussion/peripheral-neuropathy-vs-erythromelalgia/
— Erythromelalgia and Myeloproliferative disorders: https://connect.mayoclinic.org/discussion/erythromelalgia-and-myeloproliferative-disorders/

Have you been diagnosed with peripheral neuropathy?

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I have the same exact symptoms. Cold packs, gabapentin/cymbalta cocktail works for me most of the times. Also exercise is a trigger too. You can go to the Erythromelalgia Association for more info.

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@pkagarwal

I have the same exact symptoms. Cold packs, gabapentin/cymbalta cocktail works for me most of the times. Also exercise is a trigger too. You can go to the Erythromelalgia Association for more info.

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Hi –
I am on Gabapentin (seems high compared to a lot I see on here, 3200 mg a day). But it has done WONDERS for me since I started 5 yrs ago (at lower dose, increased to 3200 mg about 3 yrs ago) I am not 100% with temperature extreme discomfort, but fairly tolerable in that that I don’t have to wear socks and gloves all year round and in bed, and also not burn up in pain terribly at other times. But recently, my neurologist of very few words said “let’s add Cymbalta”.
I have been staring at the full bottle for over 2 months ; the precautions and side effects I read terrify me, so I haven’t been able to bring myself to try one. I am already severely handicapped with this unknown PN and though I’ve learned to waddle around the house without a walker, my balance issue is severe and I am a big fall risk. I fear what an injury would add to my handicap, and fear Cymbalta would make me lose my bearings when I would need to get myself to the bathroom. I have unexplained liver damage as well, and Google says Cymbalta is not good on liver, but doc of few words said it’s ok.
So as I stare at my pills in fear, can you tell me from your experience what benefit you find that Cymbalta adds to your Gabapentin regime? I hate always second guessing doctors, and I know Google and warnings aren’t always well understood by us lay people, but trust me when I say I have caught several errors in my health care over the years because of any given doctor’s functional tunnel vision vs looking at my total body health picture. Thanks for your input on your Cymbalta experience. Debbie

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@dbeshears1

Hi –
I am on Gabapentin (seems high compared to a lot I see on here, 3200 mg a day). But it has done WONDERS for me since I started 5 yrs ago (at lower dose, increased to 3200 mg about 3 yrs ago) I am not 100% with temperature extreme discomfort, but fairly tolerable in that that I don’t have to wear socks and gloves all year round and in bed, and also not burn up in pain terribly at other times. But recently, my neurologist of very few words said “let’s add Cymbalta”.
I have been staring at the full bottle for over 2 months ; the precautions and side effects I read terrify me, so I haven’t been able to bring myself to try one. I am already severely handicapped with this unknown PN and though I’ve learned to waddle around the house without a walker, my balance issue is severe and I am a big fall risk. I fear what an injury would add to my handicap, and fear Cymbalta would make me lose my bearings when I would need to get myself to the bathroom. I have unexplained liver damage as well, and Google says Cymbalta is not good on liver, but doc of few words said it’s ok.
So as I stare at my pills in fear, can you tell me from your experience what benefit you find that Cymbalta adds to your Gabapentin regime? I hate always second guessing doctors, and I know Google and warnings aren’t always well understood by us lay people, but trust me when I say I have caught several errors in my health care over the years because of any given doctor’s functional tunnel vision vs looking at my total body health picture. Thanks for your input on your Cymbalta experience. Debbie

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Hi Debbie, There are a couple of other discussions you might find helpful on Cymbalta.

— Gabapentin and Cymbalta: https://connect.mayoclinic.org/discussion/gabapentin-and-cymbalta/
— Cymbalta: https://connect.mayoclinic.org/discussion/cymbalta-2/

Are you able to talk with your pharmacist to see what they suggest on side effects or risks and interactions with other medications you take?

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@johnbishop

Hi Debbie, There are a couple of other discussions you might find helpful on Cymbalta.

— Gabapentin and Cymbalta: https://connect.mayoclinic.org/discussion/gabapentin-and-cymbalta/
— Cymbalta: https://connect.mayoclinic.org/discussion/cymbalta-2/

Are you able to talk with your pharmacist to see what they suggest on side effects or risks and interactions with other medications you take?

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Thanks John. Since I mostly due mail order prescription, I do not know my pharmacist’s face 😊and have only used online drug interaction tools. I’ve tried to steer clear of CVS during pandemic, but next time I’m in the store I will ask. Since I can’t stand long, these stores aren’t the best for waiting to be helped 😕. But I think your advice is spot on and I should try to talk to CVS.

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@dbeshears1

Hi –
I am on Gabapentin (seems high compared to a lot I see on here, 3200 mg a day). But it has done WONDERS for me since I started 5 yrs ago (at lower dose, increased to 3200 mg about 3 yrs ago) I am not 100% with temperature extreme discomfort, but fairly tolerable in that that I don’t have to wear socks and gloves all year round and in bed, and also not burn up in pain terribly at other times. But recently, my neurologist of very few words said “let’s add Cymbalta”.
I have been staring at the full bottle for over 2 months ; the precautions and side effects I read terrify me, so I haven’t been able to bring myself to try one. I am already severely handicapped with this unknown PN and though I’ve learned to waddle around the house without a walker, my balance issue is severe and I am a big fall risk. I fear what an injury would add to my handicap, and fear Cymbalta would make me lose my bearings when I would need to get myself to the bathroom. I have unexplained liver damage as well, and Google says Cymbalta is not good on liver, but doc of few words said it’s ok.
So as I stare at my pills in fear, can you tell me from your experience what benefit you find that Cymbalta adds to your Gabapentin regime? I hate always second guessing doctors, and I know Google and warnings aren’t always well understood by us lay people, but trust me when I say I have caught several errors in my health care over the years because of any given doctor’s functional tunnel vision vs looking at my total body health picture. Thanks for your input on your Cymbalta experience. Debbie

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I started with 100 mg of Gabapentin about 9 months ago and then to 300mg to 600 mg to 1200 mg. In each instance it will work for 3 days to 2 weeks and then not effective. At 1200 mg (6 months ago) my doc added 30 mg of Cybalta. That worked for a few weeks. Then my neurologist upped Gabapentin to 2400 mg. It worked really well for 2 months (no nighttime pain) but now it is a hit and miss proposition. I am not aware of any obvious side effects so far.

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@dbeshears1

Hi –
I am on Gabapentin (seems high compared to a lot I see on here, 3200 mg a day). But it has done WONDERS for me since I started 5 yrs ago (at lower dose, increased to 3200 mg about 3 yrs ago) I am not 100% with temperature extreme discomfort, but fairly tolerable in that that I don’t have to wear socks and gloves all year round and in bed, and also not burn up in pain terribly at other times. But recently, my neurologist of very few words said “let’s add Cymbalta”.
I have been staring at the full bottle for over 2 months ; the precautions and side effects I read terrify me, so I haven’t been able to bring myself to try one. I am already severely handicapped with this unknown PN and though I’ve learned to waddle around the house without a walker, my balance issue is severe and I am a big fall risk. I fear what an injury would add to my handicap, and fear Cymbalta would make me lose my bearings when I would need to get myself to the bathroom. I have unexplained liver damage as well, and Google says Cymbalta is not good on liver, but doc of few words said it’s ok.
So as I stare at my pills in fear, can you tell me from your experience what benefit you find that Cymbalta adds to your Gabapentin regime? I hate always second guessing doctors, and I know Google and warnings aren’t always well understood by us lay people, but trust me when I say I have caught several errors in my health care over the years because of any given doctor’s functional tunnel vision vs looking at my total body health picture. Thanks for your input on your Cymbalta experience. Debbie

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I had been taking 1800mg gabapentin per day. But I still had symptoms. My doctor recommended adding Cymbalta (starting out with 30mf and increasing to 60mg). Like you, I did not want to take it. After two months of staring at the bottle on top of my dresser, I decided to take it as my symptoms were getting worse. It does take a week or two to get the effects but it has done wonders for me. The usual nerve pain is mostly gone on most days. It has been 5 months since I started this cocktail and still working so far. The only side effect for me is sleepiness so I take the Cymbalta at night. Hope this helps.

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@sikocesca

I was diagnosed with peripheral neuropathy after knee replacement surgery. I have tried PT, acupuncture, CBD oil, stimulation to my spine.
However, has anyone tried LDN for neuropathy?
Please if you have let me know.

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@mywits I too had knee replacement surgery. I complained that the socks I had to wear after surgery were too tight. I also had a hip replaced years ago and don't remember the socks feeling that tight. I was told I had to wear them to prevent blood clots. When I would remove the socks to shower, I could not feel my feet. I told the doctor and he said he never heard of such a thing. I was later diagnosed with peripheral neuropathy. Before the surgery I had no problem with my feet.

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@dbeshears1

Hi –
I am on Gabapentin (seems high compared to a lot I see on here, 3200 mg a day). But it has done WONDERS for me since I started 5 yrs ago (at lower dose, increased to 3200 mg about 3 yrs ago) I am not 100% with temperature extreme discomfort, but fairly tolerable in that that I don’t have to wear socks and gloves all year round and in bed, and also not burn up in pain terribly at other times. But recently, my neurologist of very few words said “let’s add Cymbalta”.
I have been staring at the full bottle for over 2 months ; the precautions and side effects I read terrify me, so I haven’t been able to bring myself to try one. I am already severely handicapped with this unknown PN and though I’ve learned to waddle around the house without a walker, my balance issue is severe and I am a big fall risk. I fear what an injury would add to my handicap, and fear Cymbalta would make me lose my bearings when I would need to get myself to the bathroom. I have unexplained liver damage as well, and Google says Cymbalta is not good on liver, but doc of few words said it’s ok.
So as I stare at my pills in fear, can you tell me from your experience what benefit you find that Cymbalta adds to your Gabapentin regime? I hate always second guessing doctors, and I know Google and warnings aren’t always well understood by us lay people, but trust me when I say I have caught several errors in my health care over the years because of any given doctor’s functional tunnel vision vs looking at my total body health picture. Thanks for your input on your Cymbalta experience. Debbie

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Thank you Debbie! So often the side effects are worse than what I would be being treated for–they want us to think is is a small percentage that side effects happen to–not good if we are one person in that percentage. I am happy you found something that works for you. I will ask my doctor about Gabapentin. I have also heard good things about Alpha Lipoic Acid, have you tried that?

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@pkagarwal

I started with 100 mg of Gabapentin about 9 months ago and then to 300mg to 600 mg to 1200 mg. In each instance it will work for 3 days to 2 weeks and then not effective. At 1200 mg (6 months ago) my doc added 30 mg of Cybalta. That worked for a few weeks. Then my neurologist upped Gabapentin to 2400 mg. It worked really well for 2 months (no nighttime pain) but now it is a hit and miss proposition. I am not aware of any obvious side effects so far.

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@pkagarwal
Do you plan on increasing your Gabapentin? I took 3,600 mg and have known of people who took up to 7,000 mg.
Did you ask your doctor why the higher dose seems to help for a longer time?
Jake

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