see a neurologist. I take gabapentin as well for my PN. At night, I need to take Trazadone for Restless Legs Syndrome (side effect from Gabapentin?) and sleep with socks on my feet to keep the pain at bay during the night.
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.
After 10 years of very painful neuropathy, I am now trying a somewhat unconventional treatment. Medical Cannabis. it takes away almost all my pain and am left with almost complete numbness in both feet/legs. After being in pain for so many years
I welcome the numbness. Yes, it does make ambulating somewhat interesting, but I’ll take it instead of the pain.
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?
However, having said that, one member pointed out to me that she writes in all caps because she has poor eye sight due to a degenerative condition. This was not something I had considered and she didn’t realize that all caps was considered shouting. Thus I taught her how to increase the font size on her computer (Ctrl +), and she stopped using all caps.
I have peripheral neuropathy from diabetes in my hands and feet all the way to the calves of both legs. It’s getting to be so hard to deal with that painnas it shooting pains and it feels like someone is jamming needles in my hands all the time. They burn also. I’m allergic to most meds and have recently became allergic to steroids!
If anyone has any suggestions I would be happy to hear them and from the neuropathy I drop lots of stuff!
Husband has autonomic neurology with pain especially in his hand. He wears golf gloves and says it cuts the pain in half. Neurologist at Mayo says he can’t help him as he needs a muscle/neurologist. Has tests on November 14 and hopefully will see a doctor after that. Gabapentin and Lyrica does not work for him.
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.
A Mayo neurologist explained my symptoms this way. Pain/numbness, will eventually lead to numbness only once the nerve actually dies. He said there is no treatment for the numbness.
I have autonomic/peripheral neuropathy caused by GPA/Wegeners (vasculitis) for 6 yrs. I take gabapentin for the pain and cymbalta for the anxiety that goes along with it. I’m seeing a rheumotologist at Mayo Clinic in Scottsdale, AZ for these and he has also prescribed 50mcg fentanyl patches which has helped immensely. The combination does have side effects, mainly dizziness, which I deal with because of the pain relief benefit. The numdness does go along with neuropathy. That is the next most difficult obstacle. Trying to do anything, especially small is very frustrating. Buttons, zippers, coins, etc. are a nightmare at times. However, I have other health issues to deal with as well. More meds and doctors. It appears as though I will be dealing with this for the rest of my life. I turned 65 last Oct 2015.
Too bad they cannot go after those who abuse the law rather than the ones just trying to relieve their pain. I used to take Opioids. One month I was going to be on vacation and out of state. I tried to get my script filled two days early to no avail. I finally had to change my travel plans so I would be near a drug store somewhere near where I was traveling. I only had to drive 200 miles from where our plans initially were for us to be staying. Inconvenienced? Heck yes!
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.
I was given the same speech from my Mayo neurologist. The current drugs being prescribed for pain for PN do nothing to repair the nerves, they only trick the brain into masking the pain but they can’t do anything for the numbness. I’ve been struggling 15+ years and watching the numbness start in my toes and work it’s way up to just below my knees. This past March I saw a Mayo neurologist and was diagnosed with SFPN. He basically said nothing they can really do but it should progress slowly and to let them know if something changes. Stupid on my part waiting so long to see a neurologist. When I first told my doctors about the numb toes and bottoms of my feet he told me that they can run some tests on the nerves. So I asked him what if they find I have damaged nerves, what can you do? Answer was nothing so I decided not to have the tests done.
Since March I have been doing a lot of research on my own starting with reading a book by Dr Terry Wahls – http://terrywahls.com/about/about-terry-wahls/. There are a lot of scams with supplements and treatments for PN that play on the suffering with the folk that have it. So you really have to be careful. I found a closed Facebook group – “The Solutions to Peripheral Neuropathy” that provides a list of high quality supplements that have helped a lot of people with PN. I have been taking the supplements for about 2 months now and have noticed the numbness has been reduced some. Where it was just below my knees in both legs, it is now a little above my ankles and my feet feel better. Others in the group found that they no longer need to take the gabapentin and other pain relief drugs. It remains to be seen if it will completely get rid of my numbness but any improvement gives me hope. It may not work for everyone but it’s certainly worth a shot if you are in dire pain and the current treatment is not working. I ran the list by my Mayo doctor and she sent it to the pharmacist who gave me some conflicting feedback on dosages of one of one of the supplements omega 3 oils. His assessment conflicted with what I found on Mayo’s website – http://www.mayoclinic.org/drugs-supplements/omega-3-fatty-acids-fish-oil-alpha-linolenic-acid/dosing/hrb-20059372. You should always run supplements by your doctor and discuss it with them.
There is hope so never give up and keep doing your own research. Good luck!
Thanks to all. and yes @azjulie I have found that by rubbing a compound the Dr., gave me and wearing any kind of glove but the ones I have all the fingers are out and the rest of the glove covers the hand. It does help a little bit.
Hi, my name is Terry and I’ve had neuropathy in both feet and hands and half way up calves of legs for 5 + years.
Is there any things I can try for it. Thanks for listening.
Yes, I have diabetes. I’ve tried Lyrica, Neurotin and Savella none of which I can take due to severe swelling in extremities.Have an spot., to c a neurologist.
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see a neurologist. I take gabapentin as well for my PN. At night, I need to take Trazadone for Restless Legs Syndrome (side effect from Gabapentin?) and sleep with socks on my feet to keep the pain at bay during the night.
After 10 years of very painful neuropathy, I am now trying a somewhat unconventional treatment. Medical Cannabis. it takes away almost all my pain and am left with almost complete numbness in both feet/legs. After being in pain for so many years
I welcome the numbness. Yes, it does make ambulating somewhat interesting, but I’ll take it instead of the pain.
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2 ReactionsI agree @medic7054. ALL CAPS is considered shouting in online etiquette. In fact our community guidelines discourage the use of all caps https://connect.mayoclinic.org/community-guidelines/
However, having said that, one member pointed out to me that she writes in all caps because she has poor eye sight due to a degenerative condition. This was not something I had considered and she didn’t realize that all caps was considered shouting. Thus I taught her how to increase the font size on her computer (Ctrl +), and she stopped using all caps.
Try marijuana 30%thc70%cbd
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1 ReactionHusband has autonomic neurology with pain especially in his hand. He wears golf gloves and says it cuts the pain in half. Neurologist at Mayo says he can’t help him as he needs a muscle/neurologist. Has tests on November 14 and hopefully will see a doctor after that. Gabapentin and Lyrica does not work for him.
A Mayo neurologist explained my symptoms this way. Pain/numbness, will eventually lead to numbness only once the nerve actually dies. He said there is no treatment for the numbness.
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1 ReactionToo bad they cannot go after those who abuse the law rather than the ones just trying to relieve their pain. I used to take Opioids. One month I was going to be on vacation and out of state. I tried to get my script filled two days early to no avail. I finally had to change my travel plans so I would be near a drug store somewhere near where I was traveling. I only had to drive 200 miles from where our plans initially were for us to be staying. Inconvenienced? Heck yes!
I was given the same speech from my Mayo neurologist. The current drugs being prescribed for pain for PN do nothing to repair the nerves, they only trick the brain into masking the pain but they can’t do anything for the numbness. I’ve been struggling 15+ years and watching the numbness start in my toes and work it’s way up to just below my knees. This past March I saw a Mayo neurologist and was diagnosed with SFPN. He basically said nothing they can really do but it should progress slowly and to let them know if something changes. Stupid on my part waiting so long to see a neurologist. When I first told my doctors about the numb toes and bottoms of my feet he told me that they can run some tests on the nerves. So I asked him what if they find I have damaged nerves, what can you do? Answer was nothing so I decided not to have the tests done.
Since March I have been doing a lot of research on my own starting with reading a book by Dr Terry Wahls – http://terrywahls.com/about/about-terry-wahls/. There are a lot of scams with supplements and treatments for PN that play on the suffering with the folk that have it. So you really have to be careful. I found a closed Facebook group – “The Solutions to Peripheral Neuropathy” that provides a list of high quality supplements that have helped a lot of people with PN. I have been taking the supplements for about 2 months now and have noticed the numbness has been reduced some. Where it was just below my knees in both legs, it is now a little above my ankles and my feet feel better. Others in the group found that they no longer need to take the gabapentin and other pain relief drugs. It remains to be seen if it will completely get rid of my numbness but any improvement gives me hope. It may not work for everyone but it’s certainly worth a shot if you are in dire pain and the current treatment is not working. I ran the list by my Mayo doctor and she sent it to the pharmacist who gave me some conflicting feedback on dosages of one of one of the supplements omega 3 oils. His assessment conflicted with what I found on Mayo’s website – http://www.mayoclinic.org/drugs-supplements/omega-3-fatty-acids-fish-oil-alpha-linolenic-acid/dosing/hrb-20059372. You should always run supplements by your doctor and discuss it with them.
There is hope so never give up and keep doing your own research. Good luck!
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Helpful -
Hug
2 ReactionsThanks to all. and yes @azjulie I have found that by rubbing a compound the Dr., gave me and wearing any kind of glove but the ones I have all the fingers are out and the rest of the glove covers the hand. It does help a little bit.
Yes, I have diabetes. I’ve tried Lyrica, Neurotin and Savella none of which I can take due to severe swelling in extremities.Have an spot., to c a neurologist.
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Helpful -
Hug
1 Reaction