Neuropathy

[Bethy]

Hi, I'm beth and 47 years young. I've recently been diagnosed with periphial neuopathy and have been advised to go on disability. This new lifestyle is hard to adjust to as the daily pain is difficult. My doctor has tried me on several different meds., each one with its own set of side effects, but we haven't found the one works well enough to stay on. He wants to wean me off the painkillers, but at this point they're the only things that can minimize the pain. And I tell him so what if I'm addicted to them, if they offer me even moderate relief, who the heck cares?! Most people look at me and see a relative normal looking person so they don't understand the pain I'm in. They see a person whom they believe is just lazy and wants to live off the system. Even my boyfriend doesn't seem to get why I don't want to go out and play on a Friday nite.. I would really love to hear from others who are dealing with the same things I am.... Thanks

[Sue Val]

Hi I am female 50 years YOUNG. I too have been diagnosed with Neuropathic chronic pain. I live in pain everyday. I use to work in a hospital and had to quit my job. I am married with 3 girls so I don't need the system to survive. My husband makes a fairly good living. My job was sure useful though to put my girls through school and still have a 13 year old at home so this will make it very difficult when her time come. Anyway I saw your post and was feeling bad for you. I feel your suffering. The pain at times is unbearable. I have seen many doctors and none of them know how to deal with this. I live in Canada so doctors and specialists here are very hard to find especially a good one. I had a family doctor for the past 10 years and totally lost faith in him. He would not believe in me and told me not to worry about this pain it would go away. He would never want to send me for tests of any kind. Finally I had to take this into my own hands and asked a different doctor to send for a series of tests. All tests came back negative except for the emg. It showed severe nerve damage. Of course I went to this doctor and showed him my results and instead of saying he was sorry he was upset that I had went to somebody else. I slammed the door in his face and left, but now I am left with no family doctor. The doctor I did see was in a walk in clinic and not taking any new patients. This was back in 2003 and have not found a new doctor or have not found any resolution. The neurologist I see has tried all kinds of medications, Lyrica, garbapenten ect..all of which made me sick. She has now decided to put me on oxycoden but at 1 a day. This is far from enough. I take the one in the morning and do find relief but by mid afternoon the pain is electrifying again. I know what you're dealing with also when you say nobody understands. My family are all great but because this disease is not visible they can't understand the pain I have or why I have so much pain. This you can understand is heartbreaking. I use to be so lively and always the life of the party and always the one to plan things and now I can't seem to bring myself to even think about these things. But people seem to still expect me to do all that. My only wish is to find a doctor who can help me. I hope to find someone who can help everybody else with this problem. This will need a lot of research on the web I suppose. So anyway if you would like to chat let me know.
Sue

[cdon1938]

You might want to buy the book'Validate Your Pain" by Dr.Corinne Davis. In essence,addiction stemps from a person's choice to experience a "high" whereas pseudoaddiction results from the under treatment of a medical condition. Porter and Jick of the Boston University Medical Center did a study of 11,882 patients who were given narcotics to relieve pain. Only 4 subsequently had a problem with their narcotics medications and in only one case was the problem major.Get on line with the Chrontic Pain Association they have some great idea's on managing pain.

[teddybear_62]

I'm 45 years young and I have neuropathy with radiculopathy. I understand how you're feeling. I'm in pain every day and my husband says he's tired of hearing me complain about my chronic back pain and my nerve pain. I had back surgery in 2005 and am now left with permanent nerve damage, as I waited too long to have my surgery. At the time of my surgery, I was taking 900 mgs a day of Neurontin. This worked well for the nerve pain, but then it stopped working. Next, we tried Cymbalta, that made the nerve pain worse. Next we tried Lyrica - it was no help at all. With the back pain and nerve pain I also have horribly painful leg and foot cramps. I take quinine for the leg cramps, it helps some times. I take Vicodin and Soma every day to try to ease some of the pain. IBut since I work full-time as a litigation secretary, I can't take these at work. And since I sit most of the day, by the time I get home at night, all I want to do is curl up in bed and cry. I also am working on my Master's degree and take classes one night a week. I've considered disability, but I don't think we can survive financially if I do.

The pain is unbearable all of the time. I have no feeling in 3 of my 5 toes on my right foot and have balance issues as well. I feel that there is no hope or relief from this constant pain. People that don't have this condition, have no idea how excruciating the pain is.

My husband complains nearly every day about his aches and pains, but lately he's become tired of me complaining of my daily pain.

I hope you find comfort soon. I know my posting will most likely not comfort you, and I'm sorry for that. Hang in there.

[Sue Val]

Hello. I am so sorry to hear about your pain. This pain is unbearable at times I know and people with this should not have to live like this. There must be something someone can do. An animal would not suffer like this. I have the same symptoms as you. The pain in the toes and not feeling some of them. At times it feels like my feet are all cramped up or ready to go in a cramp or at times it feels like an electric shock going through me. Anything I put on them does not help. I certainly cry a lot secretly as my husband also does not understand what I go through everyday nor do my children. If it's something that can't be displayed or show there is nothing to complain about. My neurologist has prescribed oxycoden but only 2 a day. This works but only for an hr or so. I would have to take atlist 8 a day but she too does not understand how much pain I'm in. I guess she figures I am an addict and only want more to satisfy my addiction. If she only knew. I am really happy you contacted me. It helps to know you're not alone. Maybe if we come up with some kind of relief we can share our findings. Anyway keep in touch and you will be in my thoughts. You can contact me anytime.
A caring painful friend
Sue

[cdon1938]

My symptoms are similar to yours.I have read about every layman's book on pain and neuropathy. My library would be the envy of many doctors. A layman has written a book about neuropathy."Numb Toes And Aching Soles" by [moderator note: personal information has been removed] and attorney by trade.He outlines many drugs that have given relief to some people. Personally I hate to start trying every possible combination of drugs because they all have possible side effects. The Chronic Pain Association has a great deal of information dealing with pain. Please go to ther web site. Lastly you need to read the book "Validate Your Pain" by doctors [moderator note: personal information has been removed] and [moderator note: personal information has been removed]. They believe based upon studies that the chances of a person with pain becoming addict are extremely small. It would be a great book for your doctor to read.Lastly and maybe the hardest we have to accept pain as a part of our life. This is hard for me and some days I can do it. Other days it is almost impossible. When your neuropathy is idiopathic in nature the chances for a complete cure or being 100% pain free is nil. Good luck and let me know of any new drug that might prove me wrong.

[Sewinator]

Hi there, I was diagnosed three years ago... and I've been out of work for six months. Getting ready to go back next week. My pain has finally gotten to a "tolerable" stage. I am taking Topamax and Paxil. I have changed my diet to remove all dairy, eggs, and red meat. I couldn't digest any of them. I had constant diahreah (sp?). I have also cut out any white foods. That includes sugar, white starches, potatoes, rice, white bread, etc. I eat only whole wheat and brown rice products. The more natural and closer to "raw" the better. If I eat one piece of milk chocolate, I will be sent running to the bathroom within 1/2 hour. My neuropathy started to attack my intestines. No butter, no cheese, no ice cream, yogurt or any milk products. I only eat chicken and fish, vegetables and fruit. If I eat anything outside my regular diet, I will have an accident on myself and it is embarassing. I have learned to manage my bladder and bowels and to wear protective pads when I'm out in public. It is sad that at the age of 48 I have to be so cautious, but it is a fact of life.
I have lost 40 pounds and have not had any more digestion problems. I also no longer need to use canes to walk with. I am doing water aerobics at the gym.
Before I got Neuropathy I used to run 5 miles a day and I could do 200 sit ups! After I got it, I laid in bed and cried, slept, and felt sorry for myself for 18 months... and I gained 80 pounds.
I'm not saying this will work for everyone, but it worked for me. I am still really weak and it takes me a long time to get the same things done that others do in much less time. I hate that I have to wear flat shoes all the time and that I can't feel my toes or balls of my feet. I hate that I have to take medication every day for the rest of my life. I hate that I can't eat the same food that everyone else can.
My neuropathy is idiopathic. They don't know why I have it... or what to do for me. I have researched it myself and tried the diet myself. I am a believer in being your own advocate. The one who screams the loudest gets the most attention!
Take control of your recovery. Try different things and see what works for you. I believe that diet has a big part of your pain control.
Good luck and God Bless you all!

[bevie]

Hi Sue, I just found my way here after going to Webmed for info about Neuropathy in my feet and hands. I've been dealing with a host of bothersome things over the past 30 yrs...was first dxd with Myofascial Pain Syndrome...but even before that I had problems with pain in my feet and legs..they were a bit swollen way back in my teens...I thought everyone hurt like I did while waiting for the school bus. I didn't seek medical help after the first go round with therapy. Then after my last daughter was born 31 yrs ago, I because to really fall apart..was 34 at the time and was working a little pig farm and 4 gardens. That's a who other story!!! Anyway over the years I've had a pattelectomy of the right knee...taken all kinds of meds for the Fibro and Migraines...then discovered I was living with chronic sciatica and the good ole' Chronic Fatigue...dxd with DJD and DDD..had a tkr in 2003 while working in a hospital then began having difficulty remembering things...and of course with all the pain I was taking 4 to 6 Percocets a day to get thru.....I was forced to retire in 2003 but couldn't pay my Cobra so lost ins as well. Hubby had Heart surgery just after that...yea, big bill.. Well getting on with what's going on now. THE HIPS have started locking up, and oh the pain in the groin area is so very severe...so much so that I can't drive much anymore. I know I'm getting older...will be 65 on the 5th of Feb...but that's a good thing cuz I will finally have insurance and can take care of some things. I had applied for Disability at the prompting of my dr. Had a physical last week and the dr who is a Neurologist did some tests (minor) on my feet and legs then said I had a neuropathy of my feet and hands...I'd noticed tingling, feelings of pins and needles plus my feet being always cold over the past year, but thought it was connected with the Fibro...those of us with it tend to blame everything on it. I came here to learn about neuropathy...hope you can fill me in!!! ehehhe!!! Bevie

[dustdemon]

Hello I just recently discovered this site, I am 55 & up to a few months ago, I thought I was being plagued by Arthritis. Till we had a large amnt of rain in 1 1/2 days that's when the Neuropathy unloaded on me, my fingers became numb on the ends as well as my toes. My feet started burning bad & I kept having the feeling of my toes being stuck by needles, I have also had bad cramps in my toes as well as my fingers. I have also lost my balance numerous times, in the morning it feels like I have something like socks on my feet. The most mornings I wind up limping through the house, the thing that angers me is that a lot of people think that Neuropathy is not real. If I tell them what I have they look at me like I'm crazy, has this ever happened to anyone else ? Last yr I lost my wife after she had suffered a seven yr fight with the devastation of Guillian Barre Syndrome, she was also inflicted by CIDP/ Chronic Inflammatory Demylinating Polyneuropaty. Between the 2 they destroyed her entire nervous system, I took care of her for 6 1/2 yrs. Now I've been inflicted by Neuropathy & stupid people think I'm making this condition up. I just wanted to share this with everyone, Has this happened to you ?

[bevie]

I"m so sorry you are having to deal with plp who don't have a clue as well as the medical problems. Please know that you are not alone, and you are doing the right thing...you need support not being judged by others...there are many forums and groups in MSN,Delphi,Yahoo etc where you will find others who have faced the same thing you are now, give you info if that's what you need, but most of all support. (((gentle hugs))) I'd say you've had your share for way too long!!! Bevie