Neuropathy

[debljames]

About five years ago I began having burning, tingling and muscle pain in my right forearm. I ignored this at first, but it continued to get worse as time went on. By the time I decided to see a doctor (about a year later) the pain had greatly intensified and had spread up through my arm, across my shoulders, up and down my spine (mostly in my neck) and down into my left arm. I had multiple tests (MRI, EMG, etc) which were inconclusive. I had tons of physical therapy which did absolutely nothing for me except drain my wallet. After a year of this nonsense, the doctor finally decided I had radial tunnel syndrome and performed surgery on my right arm. In addition he removed a small piece of my elbow and debrided the damaged tissue. It took about a year to completely heal from the surgery which helped the nerve pain quite a bit although I was never back to 100% normal.

About 6-8 months ago the pain started to increase yet again. Now my new doctor says I have neuropathic pain with no known cause. I've only had a cervical MRI (which revealed a bulging disc) and another painful EMG that showed no nerve impingement. The doctor prescibed Neurontin. I've been taking it for a couple of weeks now. I built up to the full dosage (300mg 3x daily) slowly and have been on the full amount for 5 days now. I'm having a very difficult time adjusting to this drug. I'm sleepy and dizzy most of the day and the mood swings are horrible. I become very irrationally upset at the slightest provocation. Sometimes I feel rage. I'm hoping he can switch me to something different and am waiting to hear from him as I write this.

I should also note that I am a computer programmer and I a work on the computer 8-12 hours during the week and usually a few hours on weekend days. The work I do aggravates the pain immensely. I should also note that my Dad has neuropathy in his legs and feet and has been on neurontin for several years now. He takes 4x as much as I do! I also have the burning sensation in my heels which I never associated with the pain in my arms until now.

So back to my initial question - is neuropathy the same thing as neuropathic pain? I've been researching it and I can't seem to find a definitive answer. Has anyone had the same problem with Neurontin and has found a better alternative medication?

I really hate feeling this way - the pain and the depression that's being exacerbated by this drug is frustrating and well...depressing. :)

[chef joe]

I am a 6o year old male and have neuropathy from Agent Orange poisoning when I was in Vietnam back in the late 60's. In the past few years it has really kicked in to the point of being just about 100% disabled. I know the pain that you are in, I have tried neurontin, lyrica, everything there is out there. I've had tons of Lumber sympathetic Dystrophy blocks done to my spine, nothing works. Now they want to burn off some of my nerves at the VA hospital. If that works I'll let you know. I'm sorry for your pain, it's absolutley awful. I would give anything for a good nights sleep, have not had one in years. This really makes me think some crazy thoughts. I also have PTSD on top of this. If I find relief in anything I'll post it. Hang in there - you're not alone. Joe Evans

[debljames]

Thanks for the support, Joe. I'm only 45 and although my symptoms aren't nearly as bad as what you describe, I fear they will continue to worsen. Thankfully I can sleep with help from OTC drugs like Tylenol PM. I just can't stay awake during the day from the Neurontin! :D

I'm a little frustrated too that the doctor isn't looking harder for a cause to this. He did the MRI and EMG and that was it. Shouldn't he be doing some blood tests or something? It just seems a little early to give up on finding a cause and just prescribing drugs.

[chef joe]

Yeah, that's the deal today, keep us loaded up with drugs, especially the VA, they give them to me by the jarfuls. They even had me on methadone awhile back - no good and I didn't like the side effects.
As of now I am taking hydrocodine, thalen and baclofen for pain and clonezapan for anxiety and cymbalta for the depression from the pain, life is a nightmare. I have a 15 year old son that I idolize, so I can't give up. One thing that does give me some temporary relief is sitting with my feet, legs, arms and hands in the Gulf of Mexico and when it's colder in the winter it helps a little bit better. I live in Bradenton, Fl., so I'm only a few minuutes from the Gulf. I have also soaked them in ice water and that also helps you may want to try that. When they (VA) told me that my neuropathy was from Agent Orange I went ballistic that's what led to the PTSD diagnosis and I had to relive all of the war memories from 30 some years ago that I tried to blank out, then the nightmares and flashbacks began, I had to quit my job over it - what a mess it has been. I'm always here if you need to chat, I don't get around that much anymore but I do try to stay fit, exercise helps the neuropathy - especially stretching. As time goes on they may find some answers for this - hope so.
Joe Evans!