if you consider takeing the medication just realize a lot of doctors will push up the dosage the higher the dosage the more likely for kidney failure. this is not a long term medication but doctors like to make it long term
It's hard to be active when you are in pain, intermittent or constant. I have been trying to get about more often and the pain in my feet seems a bit better. I am not yet at the stage of taking gabapentin but will keep that in mind. Part of my neuropathy is that the nerves sometimes are not receiving any stimulation. This might explain the pain in my shoulders that I don't notice until it's really sore. I have some balance issues and am trying to walk more. I miss walking, but I have fallen in the past and that scares me. I am only 60 and don't want to end up in the hospital due to a fall. I take lots of calcium for my bones and know that walking will help strengthen that too. Just had to vent to those who understand the struggle daily. My husband is blessed not to have this. All my best to those who struggle with pain, getting around and just plain all the stuff that comes along with the neuropathy. Thanks for being here to listen to my ranting.
Hi @newzbug. I understand your dilemma. It is very hard to deal with, kind of a catch 22 situation, but perhaps more exercise will help the neuropathy. Have you tried a stationary exercise machine like a bicycle to keep active? I too have neuropathy and balance issues. I am very careful not to fall. I have tried outpatient therapy where I exercised with the stationary bicycle for ten minutes during each therapy session and found it helpful. The physical therapist worked with me to walk using a quad cane. At first it was not easy. I now walk outside my home on uneven surfaces such as the lawn and gravel driveway. I find the cane very helpful for my walking. My next plan is to order home care therapy, when it gets cooler, to do more walking outside for balance. The home care services are provided with no cost if medicare is the primary medical insurance. There is NO deductible and NO copay regardless of residence in the USA. As for the pain, I believe it has decreased through my efforts in diet and exercise. It now has been at least 2 weeks since I have been on a caffeine free diet. I know it is difficult to do without certain foods but the gains are more important to me especially at night. The burning pain seems to be less intense. I am not on ANY medications and very rarely have been on antibiotics for an infection. I do take supplements. I am about the same age and have learned different methods in order to do things again. I am not giving up but instead learning through trial and error for what is best. I wish you well in finding what is best for you.
if you consider takeing the medication just realize a lot of doctors will push up the dosage the higher the dosage the more likely for kidney failure. this is not a long term medication but doctors like to make it long term
Hello @bethmartin150 -- Welcome to Connect. Thank you for joining in the discussion. Are you able to share a little more about your diagnosis and what you find that helps you?
It's hard to be active when you are in pain, intermittent or constant. I have been trying to get about more often and the pain in my feet seems a bit better. I am not yet at the stage of taking gabapentin but will keep that in mind. Part of my neuropathy is that the nerves sometimes are not receiving any stimulation. This might explain the pain in my shoulders that I don't notice until it's really sore. I have some balance issues and am trying to walk more. I miss walking, but I have fallen in the past and that scares me. I am only 60 and don't want to end up in the hospital due to a fall. I take lots of calcium for my bones and know that walking will help strengthen that too. Just had to vent to those who understand the struggle daily. My husband is blessed not to have this. All my best to those who struggle with pain, getting around and just plain all the stuff that comes along with the neuropathy. Thanks for being here to listen to my ranting.
@newzbug@johnbishop
Dear Newzbug... All of us here can empathize completely with your struggle, and John has provided some excellent resources for your attention.
I have chemo-induced PN in my feet, legs and hands which, in my case, is similar to small fiber PN. Daily exercise is particularly important in staying mobile. My choice is a mile on a treadmill each day, plus various stretches and exercises given to me by a physical therapist. This will be life-long condition for me so I have made it a habit.
Pain/burning triggers for me include alcohol, turmeric, pepper, and spicy foods... and sitting or standing too long.
As I am unable to tolerate pharmaceuticals (like gabanoids, amitripyline, etc.) and stay clear of NSAIDs, I did find some things which have been helpful. (Please note: most of us have tried every product and procedure we have come across, and, if we're lucky, we have a few things which are comforting to us.) For my relief, it's mainly Palmitoylethanimide (PEA) -- 800-1,200 mg/day which has no known side effects nor drug interactions; and Topricin's Fibro Cream, both of which I buy on Amazon.
Hi @newzbug. I understand your dilemma. It is very hard to deal with, kind of a catch 22 situation, but perhaps more exercise will help the neuropathy. Have you tried a stationary exercise machine like a bicycle to keep active? I too have neuropathy and balance issues. I am very careful not to fall. I have tried outpatient therapy where I exercised with the stationary bicycle for ten minutes during each therapy session and found it helpful. The physical therapist worked with me to walk using a quad cane. At first it was not easy. I now walk outside my home on uneven surfaces such as the lawn and gravel driveway. I find the cane very helpful for my walking. My next plan is to order home care therapy, when it gets cooler, to do more walking outside for balance. The home care services are provided with no cost if medicare is the primary medical insurance. There is NO deductible and NO copay regardless of residence in the USA. As for the pain, I believe it has decreased through my efforts in diet and exercise. It now has been at least 2 weeks since I have been on a caffeine free diet. I know it is difficult to do without certain foods but the gains are more important to me especially at night. The burning pain seems to be less intense. I am not on ANY medications and very rarely have been on antibiotics for an infection. I do take supplements. I am about the same age and have learned different methods in order to do things again. I am not giving up but instead learning through trial and error for what is best. I wish you well in finding what is best for you.
Hi friends with balance and walking issues... I wouldn’t be as mobile today without my leg braces, which I’ve worn now for about 4 years. While they are clunky and can be hot in warm weather, I’m able to walk quite a distance with good balance and less pain and fatigue. To save strength I do get wheelchair assistance in airports, which makes a huge difference.. I’ve reported this in earlier posts so if you missed it or want info I’m happy to share info via text or email if John B oks it.
Thank you, elizm ... I will try palmitoylethanimide and Topricin Fibro Cream. I would be happy to decrease or eliminate any of the medicines I take if possible. I wonder why my pain doctor didn't tell me about pamitoylehtanimide and Fibro Cream ... I will ask him next time I see him. Peggy
Thank you, elizm ... I will try palmitoylethanimide and Topricin Fibro Cream. I would be happy to decrease or eliminate any of the medicines I take if possible. I wonder why my pain doctor didn't tell me about pamitoylehtanimide and Fibro Cream ... I will ask him next time I see him. Peggy
@pfbacon I use the Fibro Cream on my back as I have neuropathy in lower back and upper thighs sometimes my feet and I do like it . It relieves of course it isn't a cure all so you have to apply the cream when needed .
@pfbacon I use the Fibro Cream on my back as I have neuropathy in lower back and upper thighs sometimes my feet and I do like it . It relieves of course it isn't a cure all so you have to apply the cream when needed .
Please remind me where you get the Topricin Fibro cream. I’ve seen some advertised by similar name at CVS but not with specifically the name Topricin. How does it compare for pain relief to CBD oil or something else? Thanks. Margot
@margottaylor
Hi, Margot. I get Topricin Fibro Cream on Amazon. (You might want to compare ingredients with what you're finding at CVS.) For me, it's indispensable, along with the PEA.
@margottaylor
Hi, Margot. I get Topricin Fibro Cream on Amazon. (You might want to compare ingredients with what you're finding at CVS.) For me, it's indispensable, along with the PEA.
Hi, elizm, what brand of PEA do you use? I took it for two months for my severe neuropathy, and it did nothing, so I stopped taking it. Good to know a brand that has helped you. Ya never know what will work!!! I am going to get the Topricin as well. Thanks, Lori Renee
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if you consider takeing the medication just realize a lot of doctors will push up the dosage the higher the dosage the more likely for kidney failure. this is not a long term medication but doctors like to make it long term
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1 ReactionHi @newzbug. I understand your dilemma. It is very hard to deal with, kind of a catch 22 situation, but perhaps more exercise will help the neuropathy. Have you tried a stationary exercise machine like a bicycle to keep active? I too have neuropathy and balance issues. I am very careful not to fall. I have tried outpatient therapy where I exercised with the stationary bicycle for ten minutes during each therapy session and found it helpful. The physical therapist worked with me to walk using a quad cane. At first it was not easy. I now walk outside my home on uneven surfaces such as the lawn and gravel driveway. I find the cane very helpful for my walking. My next plan is to order home care therapy, when it gets cooler, to do more walking outside for balance. The home care services are provided with no cost if medicare is the primary medical insurance. There is NO deductible and NO copay regardless of residence in the USA. As for the pain, I believe it has decreased through my efforts in diet and exercise. It now has been at least 2 weeks since I have been on a caffeine free diet. I know it is difficult to do without certain foods but the gains are more important to me especially at night. The burning pain seems to be less intense. I am not on ANY medications and very rarely have been on antibiotics for an infection. I do take supplements. I am about the same age and have learned different methods in order to do things again. I am not giving up but instead learning through trial and error for what is best. I wish you well in finding what is best for you.
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1 ReactionHello @bethmartin150 -- Welcome to Connect. Thank you for joining in the discussion. Are you able to share a little more about your diagnosis and what you find that helps you?
I also have neuropathy. My diagnosis is idiopathic small fiber peripheral neuropathy. I shared my story and what helps me in a post earlier on Connect here: https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=42#comment-65985
@newzbug, I think it's great that you are still trying to stay active even when you are having some pain. I think movement helps more than it hurts. The Foundation for Peripheral Neuropathy has some good information on exercises and therapy here:
-- https://www.foundationforpn.org/living-well/lifestyle/exercise-and-physical-therapy/
They also have a fairly comprehensive list of Peripheral Neuropathy Pain Management & Treatments here:
-- https://www.foundationforpn.org/what-is-peripheral-neuropathy/treatments/
Hoping all my Connect PN cyber friends are having a pain free day.
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2 Reactions@newzbug @johnbishop
Dear Newzbug... All of us here can empathize completely with your struggle, and John has provided some excellent resources for your attention.
I have chemo-induced PN in my feet, legs and hands which, in my case, is similar to small fiber PN. Daily exercise is particularly important in staying mobile. My choice is a mile on a treadmill each day, plus various stretches and exercises given to me by a physical therapist. This will be life-long condition for me so I have made it a habit.
Pain/burning triggers for me include alcohol, turmeric, pepper, and spicy foods... and sitting or standing too long.
As I am unable to tolerate pharmaceuticals (like gabanoids, amitripyline, etc.) and stay clear of NSAIDs, I did find some things which have been helpful. (Please note: most of us have tried every product and procedure we have come across, and, if we're lucky, we have a few things which are comforting to us.) For my relief, it's mainly Palmitoylethanimide (PEA) -- 800-1,200 mg/day which has no known side effects nor drug interactions; and Topricin's Fibro Cream, both of which I buy on Amazon.
Hang in there and keep moving.
-
Like -
Helpful -
Hug
1 ReactionHi friends with balance and walking issues... I wouldn’t be as mobile today without my leg braces, which I’ve worn now for about 4 years. While they are clunky and can be hot in warm weather, I’m able to walk quite a distance with good balance and less pain and fatigue. To save strength I do get wheelchair assistance in airports, which makes a huge difference.. I’ve reported this in earlier posts so if you missed it or want info I’m happy to share info via text or email if John B oks it.
-
Like -
Helpful -
Hug
1 ReactionThank you, elizm ... I will try palmitoylethanimide and Topricin Fibro Cream. I would be happy to decrease or eliminate any of the medicines I take if possible. I wonder why my pain doctor didn't tell me about pamitoylehtanimide and Fibro Cream ... I will ask him next time I see him. Peggy
-
Like -
Helpful -
Hug
2 Reactions@pfbacon I use the Fibro Cream on my back as I have neuropathy in lower back and upper thighs sometimes my feet and I do like it . It relieves of course it isn't a cure all so you have to apply the cream when needed .
-
Like -
Helpful -
Hug
1 ReactionPlease remind me where you get the Topricin Fibro cream. I’ve seen some advertised by similar name at CVS but not with specifically the name Topricin. How does it compare for pain relief to CBD oil or something else? Thanks. Margot
@margottaylor
Hi, Margot. I get Topricin Fibro Cream on Amazon. (You might want to compare ingredients with what you're finding at CVS.) For me, it's indispensable, along with the PEA.
Hi, elizm, what brand of PEA do you use? I took it for two months for my severe neuropathy, and it did nothing, so I stopped taking it. Good to know a brand that has helped you. Ya never know what will work!!! I am going to get the Topricin as well. Thanks, Lori Renee
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Like -
Helpful -
Hug
1 Reaction