NeuroTalk Support Groups - Is it nerve pain? Ghastly back pain all over

Hi everyone,

I don't know if I have nerve pain. I broke my spine, compression fracture at L1 in Feb 2007. It healed after a few months although during that time my family thought I might commit suicide and I got put in a psychiatric facility where they literally took me by my hands and feet and threw me on my bed (long story; it was like Abu Ghraib). I was able to sit and walk although I did have chronic pain. Opiates helped.

Last year I started physical therapy and was doing very well by fall. Could leg press 80 lbs, stand on a balance ball, lift weights, use a Wii for balance games. Then my insurance was about to run out and my PT was going on vacation so he took me through a "PT marathon" to show me all the devices in the facility and create an individuall program I could do on my own (for only a membership fee of $30/month). Ever since then I've been in much worse pain. He had me do a sort of "downward facing dog" yoga movement which extended or flexed my back concavely which caused a flare-up, but which went away. During the "marathon" he had me lift my legs behind me, which caused a similar movement. Nothing hurt at the time, but the pain slowly developed into this agony.

In January I went to UCSF Spine Center where Dr. Christopher Ames (supposedly very famous in field) diagnosed "pelvic tilt deformity" of 32%, up and down not laterally. In other words, my back isn't level when I lie down, there is a tunnel under it. He said he could do fusion surgery after 6 months of Piilates.

I started Pilates and it was going okay when we only did massage and simple movements. As soon as I got on the machine and did stretches and sitting on the balance ball, the pain increased AGAIN. I would not have thought it possible, but it did. I get no pain relief from 300 mg oxycodone and 800 mg MS Contin (long-acting morphine) per day.

I have had epidurals, facet blocks, no help.

The pain is agonizing. It hurts ALL the time. Before, at the worst, when my back was first broken, I could at least lie on my side and get relief. Now, it seems everything hurts, even my skin. Prickles, tingles, unstable feeling, feels like lumps or kinks in my back, swelling on either side of my waist as well as tightness and spasms. I also take Soma and valium but they don't help either.

I sleep 1 or 2 hours at night, then have to get up and replace cold packs with heating pad.

The only pain relief I've gotten is when I inadvertently fell asleep with cold packs on and froze my back. I was actually pain free for a short time while I was numb, but I know this can cause tissue damage. I believe the skin pain started before this or I would blame that on the freezing.

MRI shows disc degeneration, spinal stenosis, osteoarthritis, impingement of bone on nerve at L1 fracture, and bulging discs which actually got better between 2 MRIs. Also dessication. Supposedly it doesn't look bad which I why I have a hard time convincing people that I am really in this much pain.

Now my pain management doctor wants to do an EMG (?) which is apparently some kind of nerve test, and get a psych evaluation for a pain pump. But how will that help if I get no relief from oral opiates?

I really don't want the fusion.

I have tried nortriptylline with no help.

Is this nerve pain? What is the difference? Does anyone have similar experience? Suggestions? HELP! I am desperate. If I were an animal I would long ago have been mercifully put to sleep. It hurts from my neck to my waist even lying down, and if I stand within a minute it's burning in agony. Just lying here on my back to use the computer hurts so I'll have to stop and read if I can stay awake.

Thanks,

Margaret