Neuropathic Pain appearing after 12 years of injury?

[agnes]

I am an L1, 12 years post. My lesion is incomplete and asymmetrical, with more damage on the right leg. It is flaccid from the knee down, with good sensation. I have been told the nerve roots on the right side were damaged, in addition to the spinal cord. In all this years, have never had any pain that could not be explained by sores, bruises, etc. Sometimes, very few, when it was too cold, or I had a UTI, there was burning in my right foot, but not a lot, if I did something like watching TV or reading, I could totally forget about it.

About a year ago, I changed a lot of my everyday habits. My health improved and stopped taking antibiotics on a regular basis, started and continued to excercise, and rested much more. The color and temperature of the right calf improved dramatically, and there was even a bit of "filling" of the muscle there. Unfortunately, the pain also started. It is a lot burning, and worse, as if a knife was slicing my flesh, all along the outer side of the right calf, from the knee to the toe. It gets worse in the cold. Sometimes, it wakes me up at night.

A few days ago I returned from a transatlantic trip and got jetlag. I lay awake for hours everynight. I also had a very bad irritation of the urethra (not infection). The pain the in the calf went to the roof!! It extended to the back of my right leg, and the perineum... I am completely and utterly miserable, and do not know what to do to control it.

I am in a lot of pain now, and dont know what to do... I have taken too much medication in my lifetime, and would hate to take any additional drug. My GP is absolutely ignorant about SCI, and I cant change to another one... DO YOU HAVE ANY SUGGESTIONS AS TO WHY THE PAIN STARTED? WHAT CAN I DO? ANY TRICKS? Dr Wise, Nurse?

Please help me.

[arndog]

How awful, Agnes. It doesn't seem fair that you didn't have neuropathic pain for 12 years and for it to start now. Neuropathic pain is very common in incomplete paras like yourself.
It also doesn't seem fair that it started as you are getting your fitness and health in a better way.
I guess it will come down to how much it is bothering you that you want to control it with medications which you don't like. In my case, the medications (lyrica, elavil) improve the quality of my life that I must reluctantly accept the side effects. Actually, at Lyrica 150 twice a day and Elavil 25 mg at night, I can't really complain of bad side effects..
I hope you find relief.
Jon

[David Berg]

It's not uncommon for neuro pain to not manifest until later, but most of the time that happens within 2 years or so from what I've heard. Still, I imagine it's possible even this late. If your doctor isn't skilled in this area, is there any prayer of an opportunity to see a specialist?

Just as an FYI, the standard, front-line approach to this sort of pain is either Neurontin or Lyrica, together with a tricyclic anti-depressant such as Elavil. Both meds work to calm nerve signals so they can help tame down neuro pain.

Given that this is such a significant change after so many years, you really should have it checked out to see if the cause can be determined. There may be something going on that can be treated.

Edit, one more thought just came to me. Since this happened after an extended trip, there's a possibility that you might have developed clotting in your legs. Have your doctor check out that possibility right away.

[woman from Europe]

I did not get any neuropatic pain before 10 years post, so it is possible. I am on clonazepam and a Norspan patch, 5mg, and I don't have so much pain anymore. Only some days and then I use some painkillers besides. I don't know the name you are using for painkillers, it is parcetamol and codein.

[mike bauer]

Your Dr. dosn't believe in Medicine?? LOL... sounds like a great Doctor... If You need medicines to help... get the proper help. Medicines when you need them... arent drugs! Mike

[Garyis]

Please help me.[/quote]
Agnes, my sci injury was 30 years ago, for the first ten years the pain was minimal, the next 10 it got worse and for the past 10 is in unbearable to the point of wanting to leave my body. I have pain 24/7 ranging from a 3 to a 7/8. When I wake up during the night the pain in my left hip in hardly bearable and I pray for sleep, my only reprieve. There are days when I am unable to do anything but lay around in a non-functioning state wanting to cry. Most of the time I just go on with what little life I have gritting my jaw and bearing the numbers 3 to 5 pain that is the usual pain at the left sciatica area, hip, (jabbing, constant burning pain in an area of about 12 inches to 14 inches), left abdomen (jabbing), both buttocks (burning), lower back (painfully sore), left leg to toes (burning/stinging).


I am lost as to what to do. I am looking for a doctor who is familiar with the electrical implants, my last hope. To see my pain story:



http://www.paralinks.net/garypain.html


Good luck, it seems to be a hit or miss thing trying to find a doctor sympathetic to an sci's pain. I have had some excellent ones and some bad ones over the years.