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Old 08-17-2007, 04:28 AM   #1
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lady53 HB User
Smile 8 years of neuropathy for unknown reasons

Hi, I'm 53 years old and have had neuropathy for 8 years and it came upon me suddenly. Honestly i was literally walking down the street at a street fair and i'll never forget the last step i took as a normal person. i remember the exact place i was when this horrid pain shot thru my toe under my toenail. in the weeks to follow i felt like there was sharp rocks inside of my foot and it hurt so bad i could not walk without shoes on. in the weeks and months to follow the pains increased to things that felt like bee stings in both my feet to feeling like someone was taking a jack-hammer on my feet. My doctor had idea what was wrong with me. He gave me amitriptline to sleep at night because I could'nt sleep because of the severe pain. And the pain became severe quickly. Anyway 8 years ago there was only one book written on neuropathy. A nurse i knew said her daughter was also a nurse and she was conducting a study on non-diabetic neuropathy. (i am still not diabetic) So I signed up for the study and they gave you a placebo for 3 months and the real thing for 3 months and you did know which you were on of course. Well anyway if i recall the drug was topomax (i think) and it did nothing. I wondered around like an idiot for 2 more years trying to get help. My doctor was still clueless. He agreed I probably had neuropathy and by chance another woman needed a ride from me to the doctors. I agreed and off we go to a pain clinic. I took her there cause she needed the ride and she had a bad back. Anyway i never heard of a pain clinic. My doctor never told me something like that exsisted. Meanwhile i am complaining for at least two years that i am in pain. So when the lady i rode checked in I asked the nurse at the desk at the PAIN CLINIC, hey do you treat people with neuropathy. When she said she did i was kind of happy that maybe these people would help me. I think I didn't sleep even 1/4 of a night in two years and i had to go to work. So you have to ask you doctor for permission (and they can't refuse you permission) to go to the pain clinic. Off I go to what was the best thing that could have happened to me. I got a dr. that actually knew what i was talking about and did'nt look at me like i lost my mind as i was describing my symptoms. On my first trip I forget what he gave me but it did nothing. I was almost not going to go back cause I figured what is the use. But I did go back and he prescribed me morphine. I couldn't believe something actually worked. You must know that in the previous 2 years I bought every possible creme and pill the pharmacy had. I tried the creme with pepper in it. I tried icy hot. Everything that had a picture of a foot on it I bought and went to the general nutricion store and bought them out. NOTHING WORKED. But finally the pain center gave me medicine that worked. Of course in about a year and a half the morphine stopped working. So then he moved up to some other narcotic and that worked well for a year. Then my body got used to that and he put me on methadone which worked very well. But he had to keep upping the dosage. I was up to 8 methadone a day and then he suggested a spinal cord stimulator. You get to have a weeks trial with it to see if it works for you and if you like it. It worked very well and I got one implanted in me. I went from taking 8 methadone to 2 or 3 a day. Now the methadone stopped working because my body became used to it (just because you get a stimulator does not assure you of not taking drugs). Now I am on oxycotyn which seems to be ok for now. Also I seen the advertisment for lyrica and if you have seen it in any magazines the 3 different pictures they use to advertise the medcine fits neuropathy symptoms perfectly. I asked if I could take that with the oxycotin and neurontin and it was ok to take with the other meds I take. I was sceptical even though I was the one who asked for the lyrcia that it would work because I figured in my head ony narcotics work on me. Well it works really good. I am amazed. The first two weeks I was on it I was starved to death. I was hungry 24 hours a day. But after 2 weeks that side effect went away. Sometimes my pain is so bad even with oxycotin and the spinal cord stimulator, that I did not even care if the lyrcia made me gain weight. It worked that well. I can't afford to gain any more weight cause I take amitriptline sometimes at night but used to take it every day and at least gained 25 pounds. But the lyrcia worked so well that I figured if I started gaining weight I would just go to weight watchers and not eat. But really I gained no weight from it and the hunger side effect diminished to nothing. So 8 years later here I am with a really good family that is probably so sick of me being sick that they can't stand it any more. I complain so much that I make myself sick hearing my own voice complain. I cry myself to sleep 5 nights a week and am scared of what the future holds for me because I now have it in my hands and the spinal cord stimulator just does your lower part of your body. I have a real good husband and mother and I have 2 grown up sons and they are all good to me. But I have a 3 year old grandaughter who I love so much and have so much fun with her that sometimes I think if I did't have her I would lay on my couch every day and sleep and watch tv and eat. My Daughter-in-law is a nurse so me and my 75 year old mother watch the baby at my moms house. Cause when she has to stay over night I can't be trusted to hear her get up. I do not know what the future holds in store but maybe there will be a new good drug that will help all of us who have this disease. I hope and pray so and I do pray for all the other people that have it that they can make it thru every day. Its so hard but just maybe they will find a medicine that will help us. i am afraid to use the spell checker cause last time i used it I erased the whole letter I wrote right before this one. So I know there are errors but please excuse them cause I don't think I can write this a third time without making myself sick of myself being sick.

Last edited by moderator2; 08-17-2007 at 05:37 AM.

 
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Old 08-23-2007, 07:50 AM   #2
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ProudMommyTo2 HB User
Re: 8 years of neuropathy for unknown reasons

{{{{{Hugs}}}}} You just told my story. Except I am 30 and my kids are 3 and 6. I remember my last healthy step. I was at Bush Gardens. I thought it was my shoes.... Now here I am almost 4 years later and boy do I wish I felt as good as what I complained about then! I am so exhausted and depressed from it all....I have a great family too and I am tired of hearing myself complain. I feel so bad for my family for having to deal with me. My kids cry because of my pain. I am too tired to do the things I want to do with them and often quite cranky. I barely sleep from the pain and I also have Interstitial Cystitis and I am up all night in the bathroom.
I am going to a allergist/immunologist soon and I am wondering if this could be allergy/diet related? I have low b-12, but I have been getting shots for months and I have only gotten worse... So I'm sorry I have no advice, I just wanted to offer support and let you know you are not alone!

Last edited by ProudMommyTo2; 08-23-2007 at 07:52 AM.

 
Old 08-23-2007, 12:03 PM   #3
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sanwan HB Usersanwan HB User
Re: 8 years of neuropathy for unknown reasons

Your stories sound very much like mine. I have had symptoms for many years. Sharp stabing pains all over, vibration feelings in chest like a little quiet motor running, loss of some feeling in my toe's and 24/7 numbness in feet. I am not diabetic but have found out that I have Celiac disease and have probably had it for many years. Celiac can and does cause this kind of nerve problems. Have you ever been tested for Celiac. A simple blood test?

Nan

 
Old 09-12-2007, 07:50 AM   #4
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suggus HB User
Re: 8 years of neuropathy for unknown reasons

Hi: I'm with you on this, you wrote my story but I have had idiopathic neuropathy for about 11 years and have rejected all of the dope. I tried Neurotin for a month and it messed up my mind.

From reading this board I realize that either I am tolerating the pain better than most or I have a less severe problem. The whole 11 years I have experimented with vitamins and herbs. I love aspirin but can't take it any longer.

I take valirian root especially at night and give myself vit. B-12 shots weeky. I've taken the shots for about 3 years and I think they help. I experimented and found .5ml shot weekly is better than a 1ml shot every other week.

I am not a doctor's favorite customer. They want $20/shot but I can buy a 6 months supply for $6 at Costco. If anyone trys this, yes you can use a diabetic needle which is painless.

I can also remember the moment I discovered I a part of my foot was numb. The neuropathy took out the toes on my left foot, moved to my right foot then sat there for years working on the rest of my feet. The worst thing was when it took my ankles out, that's alot worst than dead feet.

It's working on my hands now so sorry about any spelling errors I miss, my fingers do strange things.

The last time I went to a neurologist he really went crazy for some reason. I had the worst nerve conduction test he had ever seen and was amazed I could still walk. I think this is because I never gave up going to the gym 3 times a week. Every time I got on the treadmill I felt I was teaching my legs how to walk and communicate with my brain, and after awhile walking got easier and some of the pain went away.

Good luck everyone

 
Old 09-13-2007, 05:08 PM   #5
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woondog HB User
Re: 8 years of neuropathy for unknown reasons

if I were you, I would get on the treadmill more than 3 times a week.
I have severe pn and go 7 days a week, two hours per day and burn
2000 calories a day on it. I don't expect anybody else to do such
exercise, but try to do more. As you already found out, exercise helps.
woondog

 
Old 09-16-2007, 10:02 PM   #6
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Tight Socks HB User
Re: 8 years of neuropathy for unknown reasons

Boy, it is a comfort to know I'm not alone. So much of what all of you have said applies to me too. Hang in there and be happy for small mercies is all I can say right now. God bless.

 
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