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**Scorpion** · 29 Aug 2001, 12:59 PM

I've wondered that too, Curtis, as I have always had burning pain in my ass and legs, but I can usually block it out focusing on something else. The thing is, pain is such an individual experience, and while I may be able to block it out, someone else is going to experience it differently than I would. And while I'm an advocate of 'sucking it up' and doing with as few chemicals as possible, I wouldn't tell someone else to 'suck it up' because their pain may be more excrutiating than I can ever imagine. Like Dr. Young once said, this pain isn't in our heads, it's real even if there is no apparent cause--the nerves are sending pain signals to the brain, and if we're lucky, we can deal with them. Yet another aspect of SCI most people will never understand, and hopefully they won't have to worry about it someday.

~Rus

**Curt Leatherbee** · 29 Aug 2001, 2:27 PM

Good Point Russ

I guess there is still so little known about it. Maybe in certain injuries the nerves are very irritated to the point of creating super immense pain. I guess if I were in that situation I would look into that operation that Larry Flint got done a few years back, it worked for him and he currently has no pain. The question is? could it screw things up for when nerve regeneration was possible? and is the operation a lot to undergo.?

**alan** · 29 Aug 2001, 7:30 PM

Pain in one's ass and legs doesn't affect the use of one's arms, nor does it affect breathing and eating. I'm not overly bothered by the pains in my hands and legs, as they don't interfere with activities. Back and abdominal pain does. It's not possible to not focus on those burning parts, as I feel every move and breath.

**Scorpion** · 29 Aug 2001, 8:23 PM

Alan, with all due respect, I'd wager there are people with SCI with pain in the their legs and ass that hurts with every breath, every movement of the arms. I'm sure the pain Curtis & I experience is nothing compared to the pain you feel, but it is nonetheless real and something an A/B doesn't have to deal with. We're lucky it's not bad enough that we can't block it out (for the most part). Please don't think I'm comparing my pain to yours, because it would be ludicrous for me to do so, just as it would be for you to assume my pain is a walk in the park. It's so individual, no one can understand how badly the other hurts.

I always knew SCI came with pain, but until recently, didn't realize how debilitating that pain can be for some people with SCI. We shouldn't get into a battle of woes, because our high quad brothers (and sisters) will win every time. [img]/forum/images/smilies/smile.gif[/img]

~Rus

**cass** · 29 Aug 2001, 9:15 PM

I know lots of SCI ppl w/o pain. The most common thing I hear from ppl in pain is the burning butt sensation. Well, I certainly have that, but it is so far down the list compared to the rest of the pain, I almost want to laugh. Coping skills have nothing to do with it.

Certainly pain is individual. Every injury is unique and the spinal cord from which the pain originates is incredibly complex.

BTW Scorpion, when it comes to pain, I doubt quads have it worse. It would all be in the nature of the injury it seems to me, whether the damage is at C6 or T12.

**antiquity** · 29 Aug 2001, 9:52 PM

Interesting, I'm C7 post 22 years and have never experienced neuropathic pain. As Dr. Young said, as long as ones peripheral nerves haven't been damaged then you probably won't experience pain. When something hurts me, the only thing I get is severe AD.

**cass** · 29 Aug 2001, 10:38 PM

Originally posted by seneca:

Interesting, I'm C7 post 22 years and have never experienced neuropathic pain. As Dr. Young said, as long as ones peripheral nerves haven't been damaged then you probably won't experience pain. When something hurts me, the only thing I get is severe AD.

Wait a minute. Someone correct me if I'm wrong, but I understand the pain comes from the CNS, not the peripheral nervous system. Thus the success of the surgeries at Craig on the hyperactive nerve endings in the cord. The peripheral nerves regenerate in my understanding. Peripheral meaning a nerve in your arm vs. your spinal cord.

**alan** · 30 Aug 2001, 7:20 PM

Don't get me wrong - I wasn't disparaging how leg and butt pain affects those who suffer from them. I was just speaking from my perspective re which of my pains have the major affect on my life, and why. Obviously, if one feels like a body part is on fire, that will negatively affect them, no matter what part is burning.

**Wise Young** · 30 Aug 2001, 9:10 PM

Cass, you are right. Neuropathic pain comes from the CNS. It is different from nociceptive pain which (in latin) means pain sensation (coming from pain fibers in the periphery). Nociceptive pain implies that there is pain input from the periphery, i.e. back pain, musculoskeletal pain, decubiti.

There is a classification system that is just now being accepted in the field, defining neuropathic pain into several categories: below the injury site, above the injury site.

There is autonomic pain which is of unclear origin but it is the type that seneca describes, associated with autonomic dysreflexia.

In addition, there is allodynia which is hypersensitivity to light touch.

Finally, there are a number of central pain syndromes which occur in people who have intact sensation. Some of these may result from abnormal foci of activities in the brain and brainstem.

The mechanisms of central pain are still not well understood but at least it is now being recognized as real phenomena and no longer being dismissed as a psychiatric or psychological problem. That recognition is the first step to dealing with the problem. In the old days, when doctors use to send people with central pain to psychiatrists.

Pain below the injury site is sometimes called deafferentation pain, i.e. pain the results from the removal of sensory inputs. For example, the phantom limb pain associated with amputations or peripheral nerve injuries are deafferentation type pain. Many people with diabetes and Guillian-Barre syndrome have deafferentation pain.

Central pain is frequently associated with injury to the central nervous system. Thus, many people with multiple sclerosis, brain-brainstem-spinal cord strokes, infections of the spinal cord (tabes dorsalis), arteriovenous malformation, syrinxes, etc. develop central pain.

Wise.

**antiquity** · 30 Aug 2001, 10:24 PM

Cass,
In my response to you about peripheral nerve damage, I may have misinterpreted Dr. Young's explanation, here's what he said, this should add to what he just wrote.

Peripheral nerve reconnection and neuropathic pain

Kilgore and Seneca,
Wonderful questions. Let me try to provide an answer to these questions... with the hope that others will chime in.

1. Peripheral nerve regeneration. Kilgore, peripheral nerves provide a better environment for axonal growth than the central nervous system. This has been shown over and over again now in many experiments and in practice. Peripheral nerve surgeons (neurosurgeons, orthopedic, and plastic surgeons) have long reconnected peripheral nerves and find that about 10% of the motor axons in the peripheral nerve will regenerate and reinnervate the muscles and sensory axons will also grow back into the muscle and skin. The motoneurons reside in the gray matter of the spinal cord. The sensory neurons reside in the dorsal root ganglia that are just outside the spinal cord. If the cut to the peripheral nerve is on distal (the term distal always refers to the direction away from the central nervous system and, in the central nervous system, it refers to the direction away from the brain) side of the dorsal root ganglia, you can reconnect a cut or damaged nerve and expect some growth of the axons across the site and down to the peripheral organs. If there is not enough length of the peripheral nerve to reconnect, one can always use another peripheral nerve segment as a bridge. However, if the cut occurs between the dorsal root ganglion and the spinal cord, this causes degeneration of the central sensory axons. The dorsal root ganglion generally will not grow back into the spinal cord or, if they do grow into the spinal cord, they often will not grow up the spinal cord to the brain.

2. Neuropathic pain and peripheral nerve damage. Deafferentation or loss of sensory input to the brain leads to plastic changes of the brain and spinal cord. These changes are what causes neuropathic pain. So, for example, deafferentation from diabetes, brachial plexus avulsions, nerve root compression, transverse myelitis, multiple sclerosis, limb amputations, or spinal cord injury are all associated with neuropathic pain. The degree of neuropathic pain depends on the degree of deafferentation. Peripheral nerve transections have the highest incidence of neuropathic pain. The degree of neuropathic pain also depends on the response of the spinal cord to the injury. Injury to a peripheral nerve or the spinal cord causes a massive induction of cytokines and neurotrophins in the spinal cord. This response of the spinal cord to the injury causes extensive sprouting of axons, both sensory and motor. The former may lead to aberrant (abnormal) connections of the sensory axons and neuropathic pain. The latter may lead to spasticity.

There is still much that we do not understand concerning neuropathic pain. For example, Carlstedt from the Royal National Orthopedic Hospital at Stanmore reports that when he inserts a peripheral nerve into the spinal cord and motor axons grow into the nerve and reinnervate with muscles, patients are reporting a lessening of their neuropathic pain. Since he is sticking back the nerves into the spinal cord and presumably the cut end of the nerve is distal to the dorsal root sensory ganglia, this suggests that only motor innervation is occurring without any sensory component. If so, why should the patients be having less pain? Carlstedt suggests the startling idea that neuropathic pain may be somehow related to paralysis. Another possibility is that some sensory neurons in the spinal cord may be sending axons out into the nerves and may be receiving signals from the periphery but this would really be out-of-the-box possibility that nobody had considered before. A third possibility is that when motoneurons are active, they somehow inhibit sensory activity. The last possibility is the most likely and most interesting. It may also explain why electrical stimulation of the spinal cord reduces neuropathic pain in people. The spinal cord never ceases to amaze me with its richness and diversity.

Wise.

**Scorpion** · 30 Aug 2001, 10:36 PM

Cass,

I didn't mean to imply quads have it worse. I meant that guys like my friend who is a C-4 quad would tell me to stop bitching, because he'd take the pain if it meant he could be independent, or simply scratch his nose when it itched. It's all relative, and someone's always got it worse than you no matter how bad it seems. I also hope you don't think I was saying it's a matter of ability to cope with the pain. Sure, some people have higher pain thresholds than others, but some people simply hurt more. And they hurt more than others can imagine.

It just sounds to me like some people are saying 'just deal with your pain' while others are saying 'my pain is so much worse than yours.' Each sentiment is unfounded, because we really have no idea what the other person is feeling.

~Rus

**David Berg** · 2 Sep 2001, 7:58 AM

Seneca,

After reading your post here on spinal nerve research, I wanted to pass on a link to the newest article on my site, How Pain Nerve Cells Act When *They* Are In Pain.

I've tried to summarize what happens in sensory nerve cells when there's nerve damage and/or severe chronic pain, including some of the recent research in this field. Considering your post, I thought you might find this of interest.

David Berg
PainOnline webmaster
http://www.painonline.org

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