Frequently, we hear from people so sick that they do not feel they can be adequate advocates for their own care. A person with SCI probably may not be provided time to get care for both motor/sensory loss AND pain at a single visit. Now, studies in Alzheimer patients show that you must be fairly well just to get care. If you are really sick, you are out of luck
If SCI patients with severe CP are not the sickest people on the planet, we don’t want to think about anyone who is worse. Terminal illness is more or less beyond the average person’s ability to reflect, but unending severe pain is even more unimaginable it would appear. Everyone knows they are going to die someday, but how many people know there is a pain domain which is beyond anything they can imagine.
One of the really entertaining and likeable media stars, Steve Irwin, who managed to put smiles on the faces of millions, including providing some blessed moments of distraction for us, was tragically killed by a bull ray sting this month. Reportedly, the serrated edges of the ray barb cut into Steve Irwin’s heart, causing nearly immediate death. We will certainly miss him. He exuded the celebration and joy of life, which we borrowed, and it seems just too sad to see it taken from him. He seemed to have a double measure.
The media reported that ray venom causes “unbearable pain”. Really? Although there are not many volunteers for studies on comparative pain from venom, we have also heard that the pain level relates to where you have been stung. Applying hot water degrades the toxin immediately and treats the pain, making it “bearable” within a few minutes. Capsaicin, a potent experimental pain inducer, is usually injected proximally on the upper arm or on the back, to avoid really severe pain which would result if the lip, under the nails, or other sensitive areas were used. Capsaicin injection under the skin lasts for about thirty minutes. Heat makes this pain worse.
Since Central Pain dysesthesia is everywhere at and below the lesion, extending sometimes to the top of the head (in injury of the descending tract of Cranial Nerve V in the neck, involving the face in pain), and worse distally, it shouldn’t be too much of a stretch to consider that it also might be unbearable, since its’ burning is considerably more severe than capsaicin. It also lasts forever, in many cases. No one we know with severe burning dysesthesia thinks they could endure even a small increased amount. They already perceive their mental state as “slowly sinking”. Hmmm.
A chilling interview recently appeared in the media of an interrogator who routinely used torture. He said the person who cannot be made to talk hasn’t been invented yet. Just when we thought we were so brave, it turns out humans are wimps. Pain can break anyone. We feel safe from such pain because we cannot imagine it. Severe central pain also cannot be imagined. For that matter, it is hard to imagine any pain which we have not personally experienced. This gap in understanding extends to the communication between patient and doctor. The result is poor care.
Cole et al in Brain. 2006 Sep 2 report on fMRI pain-related brain activity in Alzheimer’s disease. We really love the functional MRI studies because they are about twenty years too late, but are finally showing what rational pain evaluation might consist of. These authors questioned the fact that Alzheimer patients are given relatively little pain relief compared to the average patient because they supposedly don’t need it.
The prescribing of pain meds under any terms in Alzheimer’s is sharply decreased. The theory goes that anyone with diminished neuronal cognitive functioning probably has less ability to sense pain.
Cole and his colleagues showed that this is a load of bionatural fertilizer. Using functional MRI brain scans, they showed that those with Alzheimer’s have precisely the same or even increased response to pain in the cingulum, insula, and somatosensory cortex. Scientists sometimes refer to the medial and lateral systems which route pain through the thalamus, meaning the emotional response to pain AND the actual pain. Cole and company showed that both the “medial and lateral” systems light up to pain stimuli on fMRI, and are not different from the medial and lateral systems in non-Alzheimer patients in degree of brain response and activity in the brain pain centers. In other words, your memory and reasoning may be wasted, but pain still gets through just fine.
The conclusion was shocking, perhaps. Those with Alzheimer’s have just as much pain as anyone else. They are merely less adept at convincing their doctors they need help. Sound familiar?
It is the same situation as having Central Pain. Because CP is a relatively unkown disease, and tends to happen to the very sickest patients, is is usually not considered worthy of aggressive treatment. No one in the field who studies CP believes this, however. In fact, the PhD’s can produce CP so easliy in rats, who immediately try to chew off their legs to escape the distal burning, that investigators sometimes express remorse at creating such a condition in any living thing. William Willis Jr. has expressed more than once his being uncomfortable with this part of his work. This attitude contrasts with the relative indifference toward humans with Central Pain displayed by so many clinicians. When have you ever heard a clinican who treats Central Pain say it sickens him or her to think of what the CP patient is going through. They prefer to talk about paralysis since they can relate to that better than pain.
Thankfully, those associated with pain clinics are not guilty of such neglect, but many who deal with normal pain, such as neurosurgeons and neurologists could use a serious upgrading on fMRI and what it shows about central pain. Sometimes a little knowledge is dangerous, and when the leading textbook of Neurology does not even mention Central Pain, we have to wonder. If you, with perhaps the most severe condition on the planet, go to a neurologist, with perhaps the best medical credentials in the field, but whose education is based on a text which never even mentioned Central Pain, there is a convergence of realities which is going to injure both. The patient will be highly insulted at the indifference and failure to acknowledge, while the clinicians will be offended at the pretense of something so preposterious. The idea that a neurologist is completely wrong about something in the nervous system is highly insulting, but actually rather common.
We are really quite tired of explaining how severe the burning is, and would like to see nerve injury pain become not only known of butr also a priority, well funded, and with appropriate recognition for the scientists who pursue it. There is simply no justification for sweeping central pain under the rug, simply because it requires a knowledge of pain biochemistry to understand what a chemical burn consists of and what it feels like. You can bet any members of the Nobel Prize committee who actually got Central Pain wouldn’t even look at another scientist, no matter what they had accomplished, if someone else actually cured central apin.
In the meantime, we are there with the Alzheimer patients, hoping for a little attention, even if we don’t know how to express it well.
