The Pace of the Pain Clinic

[dejerine]

Dear Wise,

You surprised me a little when your response to the Florida Rehab Center was negative, but polite. My own response was 100% negative, make that 200% negative, and I found some old urges to picket dumb rehab centers reemerging.(Dressed as my CP would dictate, but wearing a sign, such as

"My spouse made this sign, deal with it"
"Is it OK if my parents are helpful?"
"No condemnation without medication",
"Thanks for being inattentive to the pain literature"
"My spouse knows more neurochemistry than you do"
"NMDA-no more dumb advice"
"Nav1.3 to you too"

Politeness isn't a big priority when you are drowning in pain, or in anything else.

And so to try to understand this, when I was at the hospital today, I decided to go to the pain clinic. There I sat and observed and talked and realized in the hustle and buzz that these patients were NOT very sick. I had never really tried to be so objective an observer. I realized why docs might miss the mark so far in CP.

I believe there is a selection process going on, inherent in this site. You are selecting for the pain clinic castoffs, the severe cases which are not responding to treatment.

I could actually see myself giving some "don't fall into pain behavior" advice to some of the patients in the clinic today. However, they seem nothing at all like the cases of severe CP. I suppose it is this point, which made me uncomfortable with ANY concessions to the Florida Rehab Center. Severe CP is way, way worse than run of the mill cases.

I would venture that the severe cases only rarely GET TO the pain clinic, and when they do, are too sick to say much. They are certainly not there to cause trouble. And when the doctor goes through his little drill, and gives the usual sermon about "pain behavior", the severe CP patient hopelessly slinks out and never comes back.

They do come to your site, however. I would not trivialize anyone's pain, so I won't call anyone's predicament minor, but seeing that most pain patients are more human than animal,(most CP people being more animal than human) feel even stronger that some measure of pain measurement and the resulting stress is needed. The doctor needs a reference point beyond what he can see, think he intuits, and what the patient can say. He needs a TEST.

I can forgive the rehab doctors for speculating neuropathic pain might relate to low back pain because I have seen what is going through the clinic; but again, these people are NOTHING like the ones I met at the center doing deep brain implants. Those patients were SICK. Their lives were RUINED. Their humanity is GONE. It would be obscene to talk to the damned of "reward".

I have done the capsaicin thing, and for those who haven't, it isn't as painful as CP, but it does give the doctor an idea of what allodynia might be like, the dense burn, the peculiar quality which doesn't quite match noxious pain, can probably be understood by extension.

Since you as a doctor are seeing those able to get to the clinic, perhaps you feel like encouraging many to do better. But, if it is borne in mind, that the pain of some is so great that it takes ten minutes to type a single line (from the muscle pain, etc.) you will realize that among this selected group of patients, there is an even more severe group, those who are too sick to communicate.

The ones writing in either don't have much muscle pain or have so much muscle pain that it motivates them to angrily and obstinately strike back, or perhaps flail hopelessly, in the only way they know.

I still don't like the term "pain behavior" and again, among SEVERE Central Pain patients, it is ludicrous to talk about "reward" or "reinforcement". "Survival" or "not survival" is the only topic worth mentioning to some people. Excuse me, one other topic would be worth mentioning. Some medicine that blocks pain neurotransmitters.

Thanks for listening.

[This message was edited by dejerine on 10-09-03 at 07:03 PM.]

[Wise Young]

dejerine,

Thanks for your post. I am learning a lot from your postings.

I am sorry that I don't remember which Florida pain clinic. To tell you the truth, clinics are only as good as the individual doctors, nurses, and therapists. There are good ones and bad ones, knowledgeable ones and ignorant ones.

Wise.

[dejerine]

Thank you Wise for your reply. It embarassed me for even bringing the topic up until I could think of a gentler way of doing so. What a gracious gentleman you are to return kindness for griping.

Personally, it has been most difficult to talk to the severe cases of CP, because most are hysterically alarmed. In my first phone contact with a severe case, he did not stop loudly declaiming for two hours. A friend had asked me to call him. My LD phone bill was 79 dollars.

He was a "type A" businessman, who had things he just HAD to get back to, and just HAD to get well. No one need tell him to get going. He was already doing it. When solarscar told his possibly injuring himself by a futile attempt to get up, it reminded me of how this person impoverished himself going from one clinic to another to get well so he could get back to his business.

He had gotten off the plane in Vegas,and on the way to his car, someone attacked him and savagely beat him and robbed him, kicking him repeatedly in the neck, which injured his cord with only a minor fracture.

He had recovered, not really paying attention to the almost subclinical sensory loss in his hands, but in about two months CP appeared, which gradually evolved into something really severe. He could no longer stand the touch of clothing.

Now he was losing everything, including his wife. I advised him to take it easy, but I knew it was not right to tell him he wasn't going to find a cure. He was too panicked. He just knew he would find one. And there were lots of places promising it. He mortgaged the house and his spouse sat by in amazement as he spent all their money, until she left.

I could never get a word in as he persisted in telling me how bad it was. He was a real pain to listen to, but I felt if I didn't he would hang up and shoot himself.

After visiting everyone you can imagine, he turned into this shell of a person, who said nothing, was still clearly suicidal, and would not have been recognized by his friends. Tragic.

I believe, and others agree, that if a patient cannot wear clothing, or very little of it, this is a marker for SEVERE CP. (I am sure there are others, like SEVERE isotonic or isometric dysesthesia).

I go to a pain clinic where part of their initial workup is to infuse lidocaine IV. They almost used a positive response as the make or break diagnostic point.

Now, however, they realize there are patients BEYOND responding. These patients do NOT respond to lidocaine, nor to other meds, like high dose lamotrigine. Something is really wrong in them. They also do not respond to thalamotomy, motor cortex stimulation, or anything else that has been tried.

They are really wasted and one must treat them so delicately or they put Kevorkian on the quick dial. As a clinician sees these markers in a patient, no clothing or no movement, it can alert him to the fact this person must be fed information slowly, since they are so depressed (appropriately).

One high level PNI expert was not happy when I would not respond to lidocaine as "I should have". Later, the idea of differing "numbers" of channels or receptors required to be inactivated by lidocaine emerged and my "expert" became rather a convert and now defends the very extreme cases of CP, while continuing to adopt a different attitude toward PNI, where he is still pretty much like the rehab clinic you mentioned.

It was not until my very own university pain clinic, which had been using lidocaine IV to sort out malingerers, did an about face, and provided an opinion of their conclusions of the existence of a group BEYOND lidocaine response, which I sent to the researcher, that there was recognition that some outlier cases in CP are just beyond imagination or help.

These should be heavily sedated and encouraged generally and nonspecifically until they can access something in their minds to provide a survival strategy. Some don't make it, but they don't make it sooner if someone gives them the old "nonhelpful inattentive" thing.

We don't have to cut their cords, take out bits of thalamus, implant electrodes etc. to recognize these cases. We can spot them before all the wasted effort; if someone cannot wear clothing, or if they really cannot move. I for example did not respond to motor cortex stimulation.

As doctors begin to classify patients according to the Wall/McHenry components and the fMRI people do the same, it will probably be followed by recognition of genetically different dispositions toward certain chemical events.

So far, there is not yet in the literature, a single fMRI study where the evoking stimulus was applied DURING the imaging study. That is badly needed, to begin to help sort these CP patients out. Identify what hurts them, and do it to them, RIGHT DURING THE STUDY.

Beric was the first to publish a case report on a person functionally paralyzed in "Muscle and Nerve" Oct 1996. The person had an intact motor unit but could not move because he simply could not stand the pain. Most with severe isotonic dysesthesia evolve slowly toward less and less movement until some low level is reached, where benefit matches cost. They ration their movement. I am rationing some of mine to type.

I have encountered several who are very close to this. One of them writes to you, but is too private to reveal it.

So virtual clothing intolerance or movement intolerance really means something ugly is going on, a serious class of CP. These are all just upgrades of the Wall/McHenry components published by IASP.

Of course, most CP patients are not in this category. And many WILL be helped by Gabapentin or some of the other meds. The problem is that the high level cases are fragile, and as the doctor goes through the pharmacopoiea, each failure makes them MORE depressed, and weakens the doctor/patient relationship, which they need. Severe cases probably should not be put through this, but be sedated until they can figure a little bit out, about what they CAN do,and accept what they MUST give up.

They probably have an as yet unidentified genetic trait (many strains of rats are MUCH MORE susceptible to developing CP--see Devor in THE AXON), or else some chemical pathway is active, which is torturing them. It is these patients I am trying to protect, as too many of them go on to suicide.

Most people are not suicidal all the time, only when depressing things converge, so the trick to keep them from "trying to get up" and hurting themselves by the effort, as per Solarscar.

The doctor does better to promise no relief, so when the hopes are dashed the patient doesn't "DO" himself; but to allow them to vent, to encourage lowered expectations, and to invite the patient himself to decide what he can do and to do it, as a distraction to the pain.

Writing to your site is one such activity.

Thanks for all your patience and courtesy. It is hard to write politely and clearly when you are in severe pain. God bless you for caring.

[This message was edited by dejerine on 10-10-03 at 02:21 PM.]

[This message was edited by dejerine on 10-10-03 at 02:25 PM.]

[alan]

I didn't respond to lidocaine infusion. Just like everything else - no help.

Alan

[Karen'sMom]

My heart aches for all of you with such severe pain. I really did not know that people had to endure such pain. I am very sorry.

I will pray that some kind of medication will be discovered that will relieve it. You are very brave.

Darlene