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Idiopathic Peripheral Neuropathy-HELP

Post a new topicby myburningfeet on Sun Jan 25, 2009 2:36 pm

I am/was an active 51 year old who was diagnosed with IPN in both feet 3 months ago so at this point we just try to treat the pain. I’m on Lyrica 75mg 3x daily now. I also apply a Capsaicin cream 3x daily. It seems to work for a while after applying the cream. I’m finding that when the pain wakes me up in the night, it can only be eased by walking on the carpeted floors. I can no longer finish a gym class without my feet burning. It's as if the stepping on and off the aerobics bench is just too much for my feet. Once home and I remove the shoes the pain is less. I can pretty much only wear Dansko clogs. Does anyone have another shoe they are comfortable in? Does anyone's doc say no drinking alcohol (I like a glass of red wine each night) or walking bare footed on cold or hot hard surfaces?
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Re: Idiopathic Peripheral Neuropathy-HELP

Post a new topicby gadget on Tue Feb 03, 2009 11:58 am

Hi

I have not been diagnosed with any particular Neuropathy but what your describing is exactly what I am experiencing all the time. I am 49 years old and have had this condition for over 6 years now. It started with my toes then increased up to my ankles over the years. Not only do I get the burning, I get the feeling of crushing/tighness which is painful and the feeling sometimes of walking on my bare bones, again very painful. I to feel the benifit of removing my shoes for relief, it is the best feeling in the world, but is short lived. As for alcohol, I was banned from any alcohol for 7 months two years ago, this was to see if it made any difference, alas no it did not. so I still drink alcohol, albeit less than I did years ago (maybe just my age?). I do not take anything other than Nurofen Xtra, this does seem to help if taken regular, but to be perfectly honest I just live with it. If I thought there was any hope of a cure then I would be the first one in the queue. So, if you do know of anything then please prey tell, because I do not want to end up a burden on my family as I get older though not being able to walk.

G
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Re: Idiopathic Peripheral Neuropathy-HELP

Post a new topicby myburningfeet on Fri Feb 06, 2009 7:42 pm

Hi Gadget-
Gee, I couldn't imagine just living with it! It is so painful... I'm now taking 100 mg Lyrica three times daily and can finish an exercise class without pain, although it's tough to wear tennie shoes all day long as I used too. I had a second opinion and am waiting for the last of the lab results to come in but it is expected that all will be negative. This doc said that the reason people are asked to stop drinking alcohol is because it can interfere with the absorption of vitamin B. People without a drinking problem or vitamin deficiency should be fine. Plain and simple, I have Idiopathic Neuropathy (no know reason for it) and at this point we just treat the pain. Nurofen extra is ibuprofen with codeine right? Lyrica is specifically for nerve pain. Maybe you should ask your Dr for a different medication if Nurofen extra isn't working to your satisfaction.


ve not been diagnosed with any particular Neuropathy but what your describing is exactly what I am experiencing all the time. I am 49 years old and have had this condition for over 6 years now. It started with my toes then increased up to my ankles over the years. Not only do I get the burning, I get the feeling of crushing/tighness which is painful and the feeling sometimes of walking on my bare bones, again very painful. I to feel the benifit of removing my shoes for relief, it is the best feeling in the world, but is short lived. As for alcohol, I was banned from any alcohol for 7 months two years ago, this was to see if it made any difference, alas no it did not. so I still drink alcohol, albeit less than I did years ago (maybe just my age?). I do not take anything other than Nurofen Xtra, this does seem to help if taken regular, but to be perfectly honest I just live with it. If I thought there was any hope of a cure then I would be the first one in the queue. So, if you do know of anything then please prey tell, because I do not want to end up a burden on my family as I get older though not being able to walk.
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myburningfeet
 
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Re: Idiopathic Peripheral Neuropathy-HELP

Post a new topicby Hope75 on Fri Feb 20, 2009 9:18 am

I have to wear Merrell Primo Breeze II clogs. It's the only thing, besides flip flops, that I can wear comfortably. They are breathable, mesh. A Godsend. I still have pain, but nothing like when I wear tennis shoes.
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Re: Idiopathic Peripheral Neuropathy-HELP

Post a new topicby gadget on Fri Feb 20, 2009 10:08 am

Hi all

I have been trying "Traxam" pain relief gel/cream and it is working very well for me.
It save having to take any tablets and hits the pain direct, have a go... it can't make
things worse.

Gadget x
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Re: Idiopathic Peripheral Neuropathy-HELP

Post a new topicby milmat1 on Mon Apr 20, 2009 3:22 pm

[quote="gadget"]Hi

I have not been diagnosed with any particular Neuropathy but what your describing is exactly what I am experiencing all the time. I am 49 years old and have had this condition for over 6 years now. It started with my toes then increased up to my ankles over the years. Not only do I get the burning, I get the feeling of crushing/tighness which is painful and the feeling sometimes of walking on my bare bones, again very painful. I to feel the benifit of removing my shoes for relief, it is the best feeling in the world, but is short lived. As for alcohol, I was banned from any alcohol for 7 months two years ago, this was to see if it made any difference, alas no it did not. so I still drink alcohol, albeit less than I did years ago (maybe just my age?). I do not take anything other than Nurofen Xtra, this does seem to help if taken regular, but to be perfectly honest I just live with it. If I thought there was any hope of a cure then I would be the first one in the queue. So, if you do know of anything then please prey tell, because I do not want to end up a burden on my family as I get older though not being able to walk.

G[/quote]

I cam certainly understand your concern. I was suffering with terrible pain and burning in both feet, and about 1 yr ago I was diagnosed with Ideopathic Neuropathy. No cause known.
I have had several nerve conductance test etc which are always very abnormal. We tried several drugs that didn't help. I started on Cynbalta about one year ago and it Helped for about 6 mos. Then the pain returned but now I'm stuck because the cynbalta is a very hard drug to get off of. Even missing a single dose sends me into a mental fit!

Now the pain and burning has gotten really bad so that I am taking a lot of pain meds now too. Vicodin, IBU800's Everyday.
It feels like my feet are on fire and sometimes a jabbing pain up through the toes. UUHHG!!! However if I reach down and touch my toes they feel numb.

I have found Vitamin B-12 is very critical to nerve health and repair. Have them chaeck your B-12 !! I dont know where I will go from here but wanted you to know your not alone !!


Matt
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Re: Idiopathic Peripheral Neuropathy-HELP

Post a new topicby Hope75 on Mon Apr 20, 2009 6:24 pm

Thank you for your reply. Shoes - I LOVE my Merrell Primo Breeze II Clogs. I wear them 24/7! Do a google search on them. No, I don't own stock in the company:) I will have to try out the Danskos. In fact, my feet felt really good this weekend, so I thought I might try those pretty Nikes I had in my closet (running shoes - so mesh and leather) and I am regretting it. Feet burning as we speak. I have tried the Capscacin cream too - I wasn't sure if it helped or hurt?? It burned too, so it kind of took my mind off the other burning, that's about it.
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Re: Idiopathic Peripheral Neuropathy-HELP

Post a new topicby myburningfeet on Fri Apr 24, 2009 10:16 am

Hey Hope-
I did a google on Merrell Primo Breeze II Clogs. People love them and have several pairs in every color! I think I might try a pair although I do LOVE my Dansko's. I need to find something I can wear with shorts for the summer.
I had a cervical spine MRI last week to see if perhaps there is something going on that may contribute to my neuropathy, but no. My doc told me that sometimes neuropathy will just go away. So I stopped my noontime meds to see if perhaps I will be one of those lucky patients. So far so good...
Peggy
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Re: Idiopathic Peripheral Neuropathy-HELP

Post a new topicby Hope75 on Fri Apr 24, 2009 10:34 am

I get a little concerned over the pain meds. I haven't taken them and will try not to. I know it hurts, but ibuprofen will not touch it and most pain meds won't either. You may just set yourself up for side effects or even worse, addiction. Try other things first, like shoes, if you have to wear socks - try trouser socks (or for women pany hose or knee highs). They breathe much better. My Merrell Primo Breeze II shoes are a miracle. Flip flops are my favorite in the summer. Anyway, I take Pamelor 75mg at night, it sometimes helps. Amitryptiline helps with nerve pain as well - and it makes you really sleepy. Cymbalta didn't really help me either. I also take Neurontin - try it! My next thing to try is Lyrica, but right now I'm happy with Neurontin and Pamelor. Those are meds that are not addictive. You walk a dangerous tight rope with pain meds like that b/c they don't really help much and then you increase your dose to try to quell the pain. I would say trash them. Or, get to a pain clinic that is willing to try things other than opoids first.
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Re: Idiopathic Peripheral Neuropathy-HELP

Post a new topicby Hope75 on Fri Apr 24, 2009 10:36 am

Good, I hope you enjoy the shoes. I wear flip flops in the summer. Just plain soft, flat flip flops and they are heavenly. Sometimes cheap ones are better - not hard soled. I tried the MRI of the spine and stopping meds too. No help. I hope it is better for you, though. I have been taking Neurontin this week and it helps.
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