Discussion Topic

Tried everything - what's next?

Posted on 07/15/08, 08:25 am

I have severe neuropathy in my left leg and left food from damage sustained to my spinal cord in 2003. I broke my back so severely, that it took the doctors 37 hours to remove the broken pieces of bone from my spinal cord. I have permanent damage and over the last 5 years, the leg and food pain have grown worse and worse. I've had several back surgeries and am having another on August 19th. The surgery wont help the neuropathy - that pain is from the spinal cord damage which is permanent. I have tried EVERY pain medication (narcotic), nerve medication and seizure medication (can be effective with neuropathy) with no relief. Ive had nerve blocks, cortosone shots and have a TENS unit. They dont help. My foot hurts so incredibly bad 24/7 I just cant take it anymore. It feels like there are thousands of pieces of broken glass in the bottom of my foot and i'm walking on it pressing it in. I have a team of doctors including a neurologist and pain managment specialist and they have decided that I've exhausted all the available treatment options. I'm also told that as I age (I'm 41) the condition will likely get worse, which I know is true since it has gotten much worse over the last 5 years. I'm seen pain specialists in 3 surrounding states and my insurance is refusing to pay for any more alternative treaments (nothing conventional works). I CANT accept that I have to live in this pain knowing it will get worse with no end in sight. Does anyone have any suggestions?

Showing 7 Replies

Reply #1 07/15/08 8:25am

lmfclcls

OK - TOO EARLY TO TYPE - REPLACE FOOD WITH FOOT!
Reply #2 07/17/08 11:29am

Dezna

I am with you here. It is not nice to have such terrible pain, and then you don't now what to do next to help it. I have got terrible nerve pain in both my feet and it is horrible when I walk. I don't know what to do for myself anymore, so I can understand how you are feeling. I wish I could help you. But I can be there to support you.
Reply #3 07/17/08 1:45pm

eacraig

I understand what you are going through. I think each personâ??s pain from Neuropathy must be a little different and degrees, but without question it is almost indescribable to someone that does not have it. Everything I have taken, so far, could have been replaced with a Tic Tac. All three of my doctors are great and have sympathy and concern for me and my pain, but nothing can be done. They have so much as told me the same. We are trying Lyrica and I am up to 300mg a day right now. When I tell them it does not work, they just shake their head and look sad. I guess we will go to the maximum recommended dosage of 600mg a day in a few weeks. If you have ever taken this medication you will understand why they are concerned about the side effects. I do have a strong Lortab but only take them at night if there is no possible way I can sleep. The Lortab seems to dull the pain enough for me to get to sleep. I am sure the Lortab itself is helping the sleep take place. I do not want to become dependant on a habit forming drug but find sleeping is critical to living. If I stay very busy during the day with mental work on the computer, I get short relief periods from the pain. Although sometimes very painful, walking during the day seems to help but not always. There just does not seem to be a single answer and I would love to have one. I will keep you posted on what the 600mg of Lyrica does for the pain.
Reply #4 07/17/08 2:39pm

3debi3

The way you describe feeling like you are walking on broken glass is how my amputated leg is from the stump to my hip. I've been on everything except a tens unit which they say I can't try because I have heart problems also. All my drs. say it is neuropathy from diabetes and maybe... but no one has ever checked. That was one reason I joined this site. I need support and I'm having a hard time accepting that there isn't anything anyone can do. My heart goes out to you. I keep you in prayers. Take care. Debi
Reply #5 07/18/08 7:27am

Dezna

My doctor wanted me to go on to Lyrica, I decided not to because I have heard that one puts on weight with this medication. Because I have Peripheral Sensory neuropathy but I don't have diabetes, but could become one, I have been put on a diabete diet, so that why I decided to not have Lyrica.

I can understand what you mean about side affects, I was put on a medication (Diclophenac sodium) Well this is what happen when I took it, my arm came out in such a red rash and I kept on feeling that I was on fire, just very hot. I took myself off them, and when I went back to the doctor the next time I told him I have taken myself off the pills. He said to me that was a good think that I did that as it could damage all my organs. I was really was shock to hear that. It is always a good thing to read look at the side affects. Many pills have given me side affects in different ways.

I read a lot up on medications and I always want to know what side affects they have, so I can understand what you are saying.

I hope something works for you soon. Take care of yourself Dezna
Reply #6 07/18/08 7:33am

Dezna

I mean I was really shock to hear all this. It is always good thing to read and look at all the side affects. That is what I do, I think must pills give side affects
Reply #7 07/20/08 8:14pm

Angelgirl61

I am in the same kind of pain and on neurontin and oxy and hydrocodone. Like you nothing works. I'm going crazy. I have a foot that doesn't work...from foot drop and now the rest of my leg is stabbing burning you name it. I am on crutches, I have RA and am on my 19th surgery from hip, knee and neck replacement surgery. Just pray and pray. I've been to many doc's, many meds, and i just feel like no one can help me. I know how you feel sweetie. Keep up the good work and don't give up. One day we will find the help we need for this. Blessings, Carol