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What *is* that weird sensation, anyway?

January 19, 2012

Last night, as Jack & I caught up on  “Breaking Bad” on Netflix (Bryan Cranston is astonishing), I felt a weird sensation. Iy felt like a ribbon of cold tingling, about a finger’s width, that traveled from the edge of my scalp just along the left temple vertical ridge, down through my eye (making it blurry), through my lips, down the side of my throat, across my clavicle, down the outside of my upper arm, flipping to the other side of my arm right past the elbow, and down the back of my hand to the tip of my middle finger. (Heh, is my subconscious manipulating my body to give me the Finger?)

“What is that?” I wonder. Is it another TIA? Is my blood pressure too high? (It’s been high all day.)

It could always be a side effect. Those drugs you take can cause as many problems as they solve. (My lower legs got terrible edema when I took statins.)

Or s it another CPS sensation? Will it stay this time?

A lot of us have these little odd estheses (great word, eh?). They spring up, and may stay a few minutes, a few weeks, or forever. CPS patients all know that their disease will change as it progresses. It, too, is growing old along with you, and its arsenal of effects is simply growing, as well. The pain level subtly increases, so that one day you discover your old dosages aren’t working as well anyone. Each tick upward of the pain dial is definitely palpable. You’ll have to get the dosages in your pain meds raised.

Or it may be that you discover a strange, odd tactile sensation that is inappropriate. I kept wiping away a tear hovering at the corner of my left eyelid, after  I first had my stroke. At first, I would be mystified when there wasn’t a drop of liquid at my eye when I dabbed my eye with a tissue Then I came to recognize that it wasn’t a real tear; it was just the sensation of a tear. It was a byproduct of this lesion of the “spinothalamoparietal path.” (Wow, that’s a portmanteau word. I’ll unpack it tomorrow.) Many of us CPSAers have them: the sense someone is scratching you, or tickling you, or stroking you. Theses have a specific name; Dysesthesia (dysaesthesia). It comes from the Greek word “dys”, meaning “not-normal” and “aesthesis”, which means “sensation” (abnormal sensation)

It isn’t always an innocuous (if annoying) sensation. It can be downright agonizing. This kind of abnormal pain reaction to normal stimuli is called allodynia. Many of the most difficult and disabling CPS cases are those when the mere sensation of any substance against the skin is agony. We are talking any substance, from wool to air – the wind itself. All of these can cause tactile or mechanical allodynia. Fabrics of any coarseness at all are unbearable, and the sufferers can only find relief unclothed for the most part. Discussions of microfiber and silk clothing manufacturers are passed back and forth on our yahoo group, and the addresses of soft, smooth, wearable clothing catalogs and websites are traded. This sort of disability can make it almost impossible to work outside the home – a private, controllable, intimate environment.

The most pained of all has to be the people who have temperature allodynia, who are absolutely tormented when the external temperature varies outside a certain range. Usually this range is somewhere between 67 and 77 degrees  Now, some form of this is common to almost all CPSers. Our internal temperatures can’t handle the variance anymore, so we are confined to a ten-degree band of “weather” around us. This means, practically, that there are perhaps five or six months of the year when we can operate outside without either roasting or freezing. We are talking Reynaud’s Symptom and chilblains in the cold, and  hypothermia, even heat stroke, even the temperature is at 80 degrees and above. Our thermostats are broken. The other six months of the year are the ones with winter and summer, as well as the bizarre variations and extremes that are becoming the new normal). We can’t stay outside very long during those months. Many of us can’t engage in most winters sports without very expensive gear, need to swim in temperature controlled pools, and can’t sunbathe.

But some of us feel this even more acutely than others. For them, temperature changes or changes in the external air brushing on your skin is utter torment. I just got a letter from a man yesterday – I hope he won’t mind if I quote him, that said:

One terrible symptom is the burning and cutting that occurs when i get hold or cold, anything rubbing my skin, stress etc.  I try to avoid these triggers but I have never found any material that reliefs the skin pain so I end up avoiding clothes as much as possible.  Stay out of the heat, cold and sunlight, etc.  This has left me a hermit mostly.

“John”‘s CPS is the result of a thalamic injury, but not a stroke. He has a “a grade II tumor in the thalamus,” much more severe damage than my ischemic event. It is also far rarer. John’s story is repeated at least once a week among our Yahoo group  CPS can only have such a huge variety of ways off occurring that it means that it must, by default, have some exceptionally rare causes as well as typical ones.Those “rare” cases are some of the most intractable in the depths of their pain, presenting with esoteric and even unique features. Our list has a large percentage of lurkers, sufferers that are silent once they introduce themselves. The stress of simply dealing with daily movement and environment is so exhausting that writing is too difficult. That is why the letter from “John” was so important yesterday, and why it had to be quoted. I can never know the amount of effort and struggle that it took to produce just that one email. But its message deserves to be heard by more than just me. Maybe there is someone out there who can help CPS sufferers in some way, who needs to hear it.

Perhaps, also, this message may help someone out there that has suffered, or endures, a rare diseases that could affect your Central Nervous System in some way. That horrible mystery pain you’ve been experiencing *just* may have a name: Central Pain Syndrome, CPS. Knowing the name of your affliction is the first step to proper treatment.

For most of us, proper treatment will only come when we have recognition, when we have research, and when we have respect. We can only have these things by making our voices heard,and our situation obvious to the world. We deserve effective treatment. We deserve relief from this illness. We deserve a cure. If we have to force those facts on the world ourselves, instead of waiting for the gentlemanly charity of the medical world to notice us, then we must do that.

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