32 years old. Severe neuropathy in hands and feet. Is there anyone out there that i can talk to about this? I feel like im slowing dying. Started going to the Barrow institute in phoenix. How can a young person get through life with this. My hands and feet turn bright red from the nerves firing off. its hard to look at.
Last edited by willcross80; 10-17-2012 at 10:33 AM.
Reason: added info
The following 3 users give hugs of support to: willcross80 cactus al (12-18-2012), Darly314 (10-17-2012), June89 (10-21-2012)
Have you tried lidocaine patches? Maybe that will help your feet. Are you on any medication for it? I'm sorry for your pain. I do not have neuropathy, but my father did.
The Following User Says Thank You to slenderella For This Useful Post: willcross80 (11-07-2012)
32 years old. Severe neuropathy in hands and feet. Is there anyone out there that i can talk to about this? I feel like im slowing dying. Started going to the Barrow institute in phoenix. How can a young person get through life with this. My hands and feet turn bright red from the nerves firing off. its hard to look at.
I am 51 and have neuropahty in the hands and feet and it affects my bladder. I broke my leg and ankle six years ago because I have no reflexes in the knees or ankles. I now wear braces on both legs. It has also lead to impotence. One heck of a disease. I was luckier than you in that my neuropahty started at 45. I know the feeling about slowly dyeing. I started Tai Chi five years ago and it has helped me tremdously, do not get disheartened if you cannot do it all immediately. It was a year before I was able to finish a class due to pain or weakness. It has helped with my pain and weakness and I am stronger today than I was five years ago.
What do you wish to talk about? There are several members on this board that are active and span what seems to be the full range of this disease. Post your questions and concerns and I am sure someone will be willing to talk to you about this.
The Following 2 Users Say Thank You to tingles For This Useful Post: June89 (10-21-2012), willcross80 (11-07-2012)
Hi willcross80..Do you have pain? Neuropathy pain is horrible. I take 60mg of cymbalta, 450mg of lyrica, buTrans patch and oxicodent for pain surges or bouts. It is hard to live with & understand.. I am 58 and have had this for almost 3 years. So many of us on this blog are in the same situation. How to live with this horrible disease? My hands & feet are very weak at this point. I try to keep busy at home as I do not work anymore. If you can involve your friends & family in your journey it really helps. You are so young..I feel so bad for you. Try to keep positive, educate yourself so you can be a step ahead of the Dr's. Try to make up a routine ,this can help you get through your day. take care and continue to share your journey. June
The Following 2 Users Say Thank You to June89 For This Useful Post: tingles (10-22-2012), willcross80 (11-07-2012)
I am 51 and have neuropahty in the hands and feet and it affects my bladder. I broke my leg and ankle six years ago because I have no reflexes in the knees or ankles. I now wear braces on both legs. It has also lead to impotence. One heck of a disease. I was luckier than you in that my neuropahty started at 45. I know the feeling about slowly dyeing. I started Tai Chi five years ago and it has helped me tremdously, do not get disheartened if you cannot do it all immediately. It was a year before I was able to finish a class due to pain or weakness. It has helped with my pain and weakness and I am stronger today than I was five years ago.
What do you wish to talk about? There are several members on this board that are active and span what seems to be the full range of this disease. Post your questions and concerns and I am sure someone will be willing to talk to you about this.
I too have neuropathy both legs and diffrent degrees of muscle deterioration. It was when i sprained my ankle severaltimes over past few years and loosing the ability tostandup from squating down to pick anything up or even from a chair i went to orthopedic dr.who looked at my ankles and reviewed my emg nerve studies results that i had a condition also known as nerve palsy.tried conservative treatment not enough improvement opted for ankle fusion. My dr.was able to isolate problem toa single joint and loose tendon so joint was fused and tendon routed through bone and secured. Im inly 2.5 mo.,post op and can do more than prior,exercising in a pool would help ease pain for most.my hands are in constant pain even despite the pain meds.dont know why either ive been this way for nearly 8 years or more and am only 47.your not alone there will be good days and not so good but try and focus on the good.
The following user gives a hug of support to 1improved: June89 (11-05-2012)
32 years old. Severe neuropathy in hands and feet. Is there anyone out there that i can talk to about this? I feel like im slowing dying. Started going to the Barrow institute in phoenix. How can a young person get through life with this. My hands and feet turn bright red from the nerves firing off. its hard to look at.
I have neuropathy in both legs and both feet.
Mine is due to MS.
I understand the pain you are dealing with. My feet and legs are not red but have all sorts of different pain going on and it is constant.
Have they told you what is causing your neuropathy?
I am on Neurotin and it helps take the edge off.
Sounds like you are on the right track going to the Barrow Institute. They should be able to help you through this.
Try to stay calm while you find out what is going on.
The Following 2 Users Say Thank You to LasVegasgirl For This Useful Post: June89 (11-11-2012), willcross80 (11-07-2012)
Hello.
I'm so sorry to hear about everyone's pain and suffering.
I have had neuropathy pain for a few years, due to diabetes.
For months I have had pain and burning and have been averaging 2-4 hours of sleep a night. I finally saw my podiatrist and he prescribed gabapentin (2 pills a day), which is the generic form of neurotin.
So far it's really been helping. I've actually been able to sleep.
It's a terrible thing to have to live with. I hope and pray all of you find relief.
Terri
The following user gives a hug of support to TerriD: June89 (11-11-2012)
Hello.
I'm so sorry to hear about everyone's pain and suffering.
I have had neuropathy pain for a few years, due to diabetes.
For months I have had pain and burning and have been averaging 2-4 hours of sleep a night. I finally saw my podiatrist and he prescribed gabapentin (2 pills a day), which is the generic form of neurotin.
So far it's really been helping. I've actually been able to sleep.
It's a terrible thing to have to live with. I hope and pray all of you find relief.
Terri
Hi Terri,
Thanks so much for posting. It makes me feel better knowing we are not aone.
I too am on neurotin. I started two years ago on 300 mg a day but now the neuropathy pain is constant so I am now taking 2100-2800 mg a day.
Since I have MS, I also have spascity & take balcofen. Now that is worse and last night it kept waking me up with muscle spasms along with the neuropathy pain.
i have been living with neuropathy for about three years now glad to see that neurotin works for some one i had a bad reaction to it. i also tried cymbalta and that did not work now my nueroligist is thinking about effexor. had anyone have any experince with it.
I had gone through many diffrent rx.s lil help at best aswell I,found a dr.,who listened to me and actually has compassion for those who continue to suffer despite their having been through multiple rx.trials.End results were I was offered a pain contract and opted for it and the minimal dose of med.It was.what I needed.been on same dose for about 3years atleast and not once had to increase the dose or frequency of use.itll be nice to hear if effexor helps,the pain med I take is only helpful rx.for myself so far,always open to any treatments .best of luck and good health to you.
I had gone through many diffrent rx.s lil help at best aswell I,found a dr.,who listened to me and actually has compassion for those who continue to suffer despite their having been through multiple rx.trials.End results were I was offered a pain contract and opted for it and the minimal dose of med.It was.what I needed.been on same dose for about 3years atleast and not once had to increase the dose or frequency of use.itll be nice to hear if effexor helps,the pain med I take is only helpful rx.for myself so far,always open to any treatments .best of luck and good health to you.
Hi,
You did not tell us what med your pain doctor put you on that is helping you. Can you please let us know.
The Neurotin really messes with my thinking and I am still working. I would like to find something else.
What you are taking may be of great help to all of us.
i have been living with neuropathy for about three years now glad to see that neurotin works for some one i had a bad reaction to it. i also tried cymbalta and that did not work now my nueroligist is thinking about effexor. had anyone have any experince with it.
cocoa
Hi Cocoa,
I have not tried effexor but just did a quick research of it. It looks to be another type of cymbalta type med. Not sure if it would help the type of nerve pain we go through. But could be worth a try.
i am currently taken vicoden tried perks, ultram and opana 10 with no help. for some reason the vicoden is the only one that helps. i am now tring ms contin at night to see if it helps not sure about taken during the day because i work. i am not sure about the effexor since the cymbalta gave me such bad leg cramps it was just a thought. i am currently taken tegretol for the nerve pain.
Just wanted to say thanks for your kind words. Ive had some luck with the lyrica/gabapentin. Yea, the pain in my hands and feet gets so overwhelming but have to keep going. Thanks again.
William
I will try the patches. Yea, started gabapentin , seems to help out. Do you remember when your dad got this and what he would do for relief?
Thanks for your kind words and information.
William
Thanks for your story and useful information. You said that you have bladder problems? I have bladder problems also and pressure in the lower stomach area at night. Thats where all this started. Doctors thought it was my prostate but im reading all these things about nerve entrapment etc. Did you ever have pain or pressure in the lower stomach area? Thanks again
I got peripheral neuropathy 9 months ago following parathyroid surgery at age 64. Finally got prescription for Amitriptyline. For me it is a total miracle drug. It is a tricyclic anti-depressant that is also sometimes used for nerve pain. Dr. said to start with 25 mg. and work up to 100 if I needed to. After 1 DAY all of the symptoms were greatly reduced to the point they are only mildly bothersome if at all. I never needed to increase the dose. I experimented with stopping it, thinking maybe it had gone away on its own. After 2 days, all the symptoms were back. Started taking again, and symptoms went away. I would highly recommend trying it. It may not help everyone, but I am shouting from the rooftops about how it helped me.
The following user gives a hug of support to oldgal65: 1improved (12-17-2012)
The Following User Says Thank You to oldgal65 For This Useful Post: 1improved (12-17-2012)
Amitriptyline is great for nerve pain but be carefull i gained almost 100 pounds in 2 years on this medication. i know it was the medication because as soon as i stoped i lost over 30 pounds in a month and still losing.
I was luckier than you in that my neuropahty started at 45. I know the feeling about slowly dyeing. I started Tai Chi five years ago and it has helped me tremdously, do not get disheartened if you cannot do it all immediately. It was a year before I was able to finish a class due to pain or weakness. It has helped with my pain and weakness and I am stronger today than I was five years ago.
Re: peripheral neuropathy 
Re: peripheral neuropathy 
