Is there a difference between Central pain and Neuropathic pain?

[KyleP2112]

Maybe I'm using the wrong term, but I've always called my burning, tingling pain...neurogenic pain. Since my injury is 'incomplete' I do have some feeling & movement below my level of injury. My pain goes from comparatively mild for several days to severe for a few days.

Chronic pain has been one of toughest aspects of living with SCI...my pain had been severe but seems to be somewhat better after I increased one of my pain meds...150 ml of Effexor generic & 4 ml gabitril helps. Good luck all.

[swh2007]

The taxonomy committee of the IASP decided to lump both central and peripheral pain under the same term, "NEUROPATHIC PAIN". In my opinion this is ill advised and reflects the lack of a vocabulary by which the clinician can tell what he is dealing with.

Having a DSM number unique to CP permitted some Central Pain patients to get more care. Now, they appear to deserve nothing more than someone with diabetic neuropathy.

If clinicians would use the Mitchell test (exacerbation of pain from light touch [eg. a newspaper laid on the skin], is immediate in peripheral nerve injury, but delayed by seconds to perhaps 20 seconds in central pain) they would be able to better tell the difference.

They also could simply look at the lives of those with the condition. If the patient is completely taken apart and looks like they really almost need to be terminated out of mercy, so to speak, that is central pain. (Posting frequently on Grange's" I can't stand this &%$&%&@ pain" thread is also a clue) On the other hand, if they hurt, that is peripheral pain. Worlds away from each other in magnitude. The doctor must ask the right questions to get the answers they need, and few do.

However, even this distinction won't work since most who get central pain get a moderate pain. I know quite a number with post SCI pain who can still wear clothing etc. It is when you get into the agonies of someone like Alan, Cass, Bollefen or Hipcrip (pardon for those omitted) that you really start to become aware what a monster Central Pain is. One sees different statistics.

CP gets missed a lot. Betty Jo Hamilton, who was a patient of "Dr. Death" was widely reported in the newspapers over euthanasia, but not one newspaper article reported that she had CP and had had TEN surgeries to try to get rid of it. She was also a bona fide patient at Duke pain center. However, the osteopathic ER doctor who received her dead body from Dr. Kevorkian said he doubted she really had any pain. So if even suicide doesn't raise eyebrows, the public and the medical profession can be perceived as being possibly lacking or even totally ignorant as to the condition. That does not help accurate reporting of statistics.

Remembering that most SCI patients have had surgery and have musculoskeletal pain from the injury and/or the surgery, the burning pain of injured nerve occurs to a slight degree in about fifteen percent of all SCI patients. Only a minority of these will really be gutted by the pain.

The name central pain originally was reserved for the truly ugly cases, but those who are enduring okay also fall under the category and can have a great deal of pain, just not the personality destroying pain of all out CP. Riddoch (1940) was the first to use "central pain" and he defined it as a "pain beyond pain". S. Weir Mitchell called it "pain of central origin" (1876), as did Dejerine, Egger, and Roussy (1903), who focused on those with CP from stroke in or near the thalamus (now thought possibly to actually be in the subthalamus).

You can see why the IASP just lumped everything together. However, there is no reason to mistrust CP patients, since most don't respond to opiates, unless it is sedation you are after. Many docs disagree and say high dose opiates work, but I do not personally think this is commonly the case and when it is, I have to wonder if it is the musculoskeletal pain which is being reached, with any help to the burning being simple sedation and NOT pain relief. I could be wrong on this point.

There is nothing to say CP patients cannot have peripheral neuropathy and tons of regular nociceptive musculoskeletal pain also.

At present, it is futile for the physician to grade pain. We have to trust the patient. Drug seeking is reasonably easy to figure out, but we should never make that our first assumption about a person who claims to be in severe pain and whose lifestyle proves it and wants opiates. Physiologically opiates theoretically should not be able to help CP because they EXCITE the Central Nervous System, whereas they INHIBIT the peripheral nervous system, which is where ordinary pain (nociceptive pain) is processed.

Doctors have to know CP exists before they will ever diagnose it, and the lumping into neuropathic pain cuts against this knowledge.

Fully elaborated CP is the most severe pain state known to man according to Ron Tasker, and they don't come any smarter or more experienced or more published than Ron Tasker (150 articles and counting).

No one is saying that about the peripheral neuropathies, bad though they may be. People are spending a fortune for back pain, which isn't as severe as CP in virtually all cases. Demoting central pain to the level of diabetic neuropathy is a slap in the face. There are a great many pain docs who have never seen a bona fide case of severe CP. That is because it is uncommon. Less severe pain after SCI is about one in fifteen cases of cord injury, the majority of those not being fully elaborated. Fully elaborated means the pain is centripetal, your clothing will burn you and you will have lost the precise sense of where the surface of your skin is. It also used to mean opiates are of no benefit, but there is enough debate about opiates that that criteria has been long since dropped.

Good to hear from you Dej. I guess I am one of the 15 but at least not among the most severe. It goes against the definition of CP and CP common sense, but I actually get some comfort from putting heavy wools socks on when the cold/burning is at its worst and I have to try to sleep to escape it. Maybe that's just because I used to do that at the beginning when I had no idea why my feet were so cold that they were burning and I tried the sock thing (psychological comfort). I guess I don't know where my skin is sometimes.

My personal experience is that doctors often seem to know that an incomplete (my case) SCI causes the burning pain, but they don't call it CP. Neurogenic seems to be a favorite way to describe this SCI problem as well as others, e.g., neurogenic bowel and bladder.

I'm glad my fist pain doctor finally got her medical license back. The Feds tried her for criminal drug over-prescription and she won. That doesn't happen very often. I'm sure the process has taken a heavy toll on her life and finances......

[darkeyed_daisy]

My doc has multiple regional pain syndrome patients and sees significant differences. while trialing my it pump i shared a room with one. I found his condition confusing but significantly different from my own issues and experience. Just sayin.

My former boss was in a motorcycle accident and had it in his right arm. At the time I worked with him, we had some similarities but some of my issues were quite different than his too. His hand had atrophied and was twice as small as his other hand. But he truly did suffer on his bad days.

Can I ask how yours are significantly different? None of my other doctors have ever used the term CRPS to describe me. So I question whether it is an accurate diagnosis for me. At times my legs are like ice cubes and my skin is different. It has become rougher almost like dry skin but not and shiny. Below my knees has a different texture than what is above the knees. My hair also never grew on my legs since my accident.

I thought my issues were all just SCI related but the more I googled, the more commonalities that I found.

[arndog]

Man, that CP club is one I don't want to pay membership dues to belong to. I'll stick to calling it 'nerve pain'. I think the more you marginalize the condition and limit the membership, the more it will be swept under the carpet and not see any research dollars, unless Bill Gates or the likes get 'CP''. I think you may have to rethink being a 'splitter' versus a 'lumper' and hope all ships rise in an increasing effort to stamp out neuropathic pain and take a ride with the diabetic neuropathy research. Who wants to study some problem that a few miserable souls have?

[arndog]

DD - CRP or RSD - reflex sympathetic dystrophy is a nasty problem that is very debilitating. It can happen from limb trauma like your boss's motorcycle accident or even something very minor like a wrist fracture or a cat bite. I don't know much about it except it can limit functional capability of an extremity and often has findings of tempurature changes to the skin, hair loss, atrophy, and horrific pain. A buddy of mine who is an ER doc broke his wrist and ended up with that for 2 years before he got it under control. Man, did that humble him and make him see chronic pain and neuropathic pain in a different light. I told him (jokingly) that he was a whiner and the pain wasn't real ! !

[bollefen]

Darkeyed Daisy,

I have contemplaed but cannoy respond I was on drug trials begging to die at the time. His was bad on and off his lower leg looked funny, he slept and moaned and occassionally woke up, he could talk while in an episode. it wasn't pretty.

wish i could say more but I was in agony the whole time, an extremely bad run so not aware enough. he was in 2 of the 9 days I was in and I remeber him the least of my roomies as I was at my worst.

Had one brief converstaion when he came in then I crashed into the CP abyss, the nurses said it scared him and he asked for a transfer to another room but was discharged the next day


sorry i couldn't be more help

ket

[darkeyed_daisy]

I guess I was just trying to understand the similarities as CRPS, Neuropathic pain, and Central Pain syndrome all share some of the same symptoms. However, they seem to have significant differences too.

I don't want another label. I know they ask lots of questions about diabetes every time I go to the pain clinic. They do treat alot of diabetic neuropathy and peripheral neuropathy patients. Every person that I come in contact with during my office visit always asks the diabetes and alcohol questions. I think they lump the neuropathies together. I don't fit into those either.

This is my first experience with a true pain clinic and over the years I have been labeled with alot of diagnoses that I just didn't have because the ICD-9 system is just not set up for chronic pain. Most of them neuropathies because the system just not support or adequately describe the different syndromes.

Everything you said SWH is true.

There is nothing to say CP patients cannot have peripheral neuropathy and tons of regular nociceptive musculoskeletal pain also.

When you have both it is hard to talk to a doctor that doesn't acknowledge both types of pain and realize that you can have both. When you try to explain to a doctor that you have both, they act like you can't possibly know that.

I have learned so much from you about the differences in the disorders. I am still trying to understand some things.

Arndog, my boss was the only one in the whole place that could relate to what I experience with my legs. But I don't think CRP or RSD is what I have. I saw him some days in agony like Bill describes. I have never been to the place that he describes but there are days that it gets so intense my memory goes bad and I have trouble remembering even what I said the day before. I hope that makes sense. I know we all describe different depths of pain/agony.

Good to hear from you Dej. I guess I am one of the 15 but at least not among the most severe. It goes against the definition of CP and CP common sense, but I actually get some comfort from putting heavy wools socks on when the cold/burning is at its worst and I have to try to sleep to escape it. Maybe that's just because I used to do that at the beginning when I had no idea why my feet were so cold that they were burning and I tried the sock thing (psychological comfort). I guess I don't know where my skin is sometimes.

SwH, One leg can be cold to the touch and the other hot but the burning pain and what I describe as "the skin being rubbed off with a brillo pad while pouring alcohol on the raw areas with a random ice pick poking different places" is the same. A light touch sends me through the roof while a heavy touch results in a numb feeling. Sleep is the only thing that gives me relief at that point. Its on the inside of my calves that can't be touched.

Its hard to get braces made and explaining to an orthotist that the brace cannot touch this area because of the burning. They always look at me like I am crazy.

[bollefen]

LOL re braces Darkeyed

"Its hard to get braces made and explaining to an orthotist that the brace cannot touch this area because of the burning. They always look at me like I am crazy."

So i try to hold down a job and typicallt do a skype meeting but wear no pants due to the bruning waist down.

At a prior job before they fired me I was doing a skype and had a white shirt and tie on and had to get up forgetting skype was on and everyone saw I was only half dressed, no one in the company didn't hear about it or rib me about it. Was truly funny. I had forgotten that til I read your post.

ket

[darkeyed_daisy]

"Its hard to get braces made and explaining to an orthotist that the brace cannot touch this area because of the burning. They always look at me like I am crazy."

So i try to hold down a job and typicallt do a skype meeting but wear no pants due to the bruning waist down.

At a prior job before they fired me I was doing a skype and had a white shirt and tie on and had to get up forgetting skype was on and everyone saw I was only half dressed, no one in the company didn't hear about it or rib me about it. Was truly funny. I had forgotten that til I read your post.

ket

That is funny.

I found this a few minutes ago.

This may help some here who are trying to understand it.

http://www.theacpa.org/uploads/ACPA_...nal_011313.pdf

from the American Chronic Pain Association.

http://www.theacpa.org/condition/neuropathic-pain

There are a few resources on this link. The communication tools may be helpful for some of the new people who are trying to communicate in "pain language" with their physicians.