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Old 09-11-2012, 06:24 PM   #1
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New to neuropathy, and some questions

Hi all!

I'm new to having neuropathy...was diagnosed with it after spinal fusion surgery caused nerve damage in my left leg. I have intense burning and sensitivity in my toes, to the point that even my light bedsheets make them feel like someone is raking sandpaper over them. And now my leg muscles are just feeling extremely weak, and I'm constantly tripping.

My doc has me on what I think is a very low dose of neurontin, 300mg per day. It helped at first, when I first started taking it, but not much anymore. I have a call into him to see about increasing it.

Has anyone had any luck with anything topical for the toes burning? I've also noticed that compared to my good foot, the bad toes also look very dry and leathery, even though I moisturize them like my good foot, which looks fine. Does anyone else have that issue?

Thanks for reading! Glad to have found such a great support group here!
Kelli

 
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Old 09-12-2012, 09:12 AM   #2
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Re: New to neuropathy, and some questions

Hello,

I have neuropathy and have stabbing pain sensations, burning, and muscle spasms. I cannot compare my feet since both have neuropathy but I have to be careful of my feet just like a diabetic. Inspecting them and caring for them.

I have had no luck with a topical but I understand some people use caspisum. I take Lyrica at 350 milligrams a day but it is used in conjunction with amitryptline and pain medication. Without the pain medication I find it very hard to sleep and function normally. I was lucky in that my regular doctor started the pain medication.

I wish you luck.

 
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Old 09-12-2012, 11:48 AM   #3
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Re: New to neuropathy, and some questions

Hi. I am not sure that I have any suggestions for you. I feel like I am in the same boat as you.

I have been thru 7 spine sugeries; which includes putting in a spinal cord stimulator and removing it since it didnt work.

I had gone thru an EMG and it showed severe nerve damage in the neck and low back; severe arthritis and neuropathy probably due to both the spinal issue and the diabetes.

As to my legs I have had severe numbness in my left leg from the knee down. It is there 24/7. I have issues with cramping in my legs. Recently I have noticed numbness in my right leg as well. I get what feels like pins and needles in the foot/toe area. I have loss of balance issues as well. I have not fallen as of yet but it worries me that one day I will.

I tried neurontin several times. First time at a very high dosage of 3000 or 36oo mg. I cant remember which one. then tried a lower dosage of 300 mg I think. Again cant remember exact dosage. Either way the neurontin was ineffective for me.

I am now on hydrocodone and tizanidine. It does take some of the edge off at times. But the feeling of numbness in my legs never ever goes away.

With the nerve damage I have not sure at this point that anything can be done. Nerves as far as I know cannot be regenerated.

Seems like conditions is getting progressively worse.

 
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Old 09-14-2012, 11:51 PM   #4
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Re: New to neuropathy, and some questions

Hi Kelli372
I have small fibre neuropathy and both feet are numb, tingly, swollen with a tightness, spasms, the pain is always there. My toes do not move at all. Nothing can touch my feet.
The thing is to decide on quality of life with or without drugs. You need a Dr. who will have compassion for your discomfort. I have that DR.. I am lucky that way. We are continuing to find the right balance of the daily pain & then there is the moment that the pain just throbbs & throbbs, I call these bouts. Crying does help.
I take BuTrans 10mc patch, with 450mg of lyrica, 60 mg of cymbalta.. for these bouts of pain I have oxicodent. I also take a sleeping pill. If it was not for these drugs I would go crazy with pain.
I have tried the topical with no luck.
Neuropathy pain is hard to understand for people who do not have this. Even us with this pain just don't get why it is so bad, why???
This is starting to sound depressing. The reality is..IT IS WHAT IT IS.. and we have to stay positive...one day there will be a cure....try to focus on other things in your life...I have grandchildren who light up my life and I forget about the pain for that moment.
People here on this blog are extremely willing to hold out there hand for you to grab it & squeeze it hard.. we will help you get through it.
So Take care & keep us updated on how you are doing. June

 
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Old 09-24-2012, 06:55 PM   #5
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Re: New to neuropathy, and some questions

Hi Kelli372, I have had drop foot with the pain. What gets me through the day is anti-depressent pills, and take a few hydrocodone for those times when the pain starts to get painful. I agree, it's what you decide the quality of life you want. Sometimes, you need to shed some tears, get on this board and read advice from others, and keep your faith.

 
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Old 10-11-2012, 08:29 PM   #6
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Re: New to neuropathy, and some questions

Quote:
Originally Posted by Kelli372 View Post
Hi all!

I'm new to having neuropathy...was diagnosed with it after spinal fusion surgery caused nerve damage in my left leg. I have intense burning and sensitivity in my toes, to the point that even my light bedsheets make them feel like someone is raking sandpaper over them. And now my leg muscles are just feeling extremely weak, and I'm constantly tripping.

My doc has me on what I think is a very low dose of neurontin, 300mg per day. It helped at first, when I first started taking it, but not much anymore. I have a call into him to see about increasing it.

Has anyone had any luck with anything topical for the toes burning? I've also noticed that compared to my good foot, the bad toes also look very dry and leathery, even though I moisturize them like my good foot, which looks fine. Does anyone else have that issue?

Thanks for reading! Glad to have found such a great support group here!
Kelli
Hi Kelli, I have neuropathy in both legs and feet. I have constant burning in my legs, worse on left and sides of feet feel like I have open sores. My neuropathy is caused from MS but the neuropathy started two years ago but I'm in constant pain for the last six months. I am on neurotin too but slowly upped my dose and now up to 2800 mg a day. Without it, I could not take the pain. I am also taking low dose of hydrocodone three times a day. I also get the sensitivity issues.

I am experimenting making my own capsaicin cream to help with the burning. It does seem to help. Fight fire with fire. I hear the over the counter cream is not strong enough. You can google "how to make capsaicin cream" and make your own. Just make a smaller amount since your problem is mainly in your toes therefore you don't need to make a big batch.

 
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Old 10-12-2012, 10:22 PM   #7
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Re: New to neuropathy, and some questions

Hi Kelli
I am like all of the others, with symptoms in both feet and legs. I have rheumatoid arthritis thrown in to the mix as well as fibromyalgia.

June, tingles, pebble beach, gimp and lasvegasgirl have all given heartfelt advice!
We have to treat ourselves with kindness, know when to rest and when to ask for more help from your doctor.

I personally find warm water baths help, along with medications for the awful spasms. I haven't had any success with anything topical but my neurologist did once mention having a salve compounded. The price was too high for me, it was expensive, so I couldn't get it.
I hope you find some relief!!
With my very best wishes,
Daisy

 
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Old 10-12-2012, 11:23 PM   #8
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Smile Re: New to neuropathy, and some questions

Quote:
Originally Posted by June89 View Post
Hi Kelli372
I have small fibre neuropathy and both feet are numb, tingly, swollen with a tightness, spasms, the pain is always there. My toes do not move at all. Nothing can touch my feet.
The thing is to decide on quality of life with or without drugs. You need a Dr. who will have compassion for your discomfort. I have that DR.. I am lucky that way. We are continuing to find the right balance of the daily pain & then there is the moment that the pain just throbbs & throbbs, I call these bouts. Crying does help.
I take BuTrans 10mc patch, with 450mg of lyrica, 60 mg of cymbalta.. for these bouts of pain I have oxicodent. I also take a sleeping pill. If it was not for these drugs I would go crazy with pain.
I have tried the topical with no luck.
Neuropathy pain is hard to understand for people who do not have this. Even us with this pain just don't get why it is so bad, why???
This is starting to sound depressing. The reality is..IT IS WHAT IT IS.. and we have to stay positive...one day there will be a cure....try to focus on other things in your life...I have grandchildren who light up my life and I forget about the pain for that moment.
People here on this blog are extremely willing to hold out there hand for you to grab it & squeeze it hard.. we will help you get through it.
So Take care & keep us updated on how you are doing. June

 
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Old 10-12-2012, 11:27 PM   #9
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Smile Re: New to neuropathy, and some questions

Hi there,
I also have nuropathy the small fiber sort....this is now traveling through the rest of my body and now I have stinging skin on my fac throat and neck. I ahve read your post and it said that you take lyrica can you please tell me if it put on weight. I am so sorry for your troubles and I understand the pain.
Many thanks for reading this
Kind regards Pigeon

 
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Old 10-13-2012, 04:51 AM   #10
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Re: New to neuropathy, and some questions

Pigeon,

I am not sure that Lyrica adds weight. I just know that I am having problems losing weight. My weight is staying where it was when I started.

 
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