We Need Your Feedback (reader comments)

Thank you for completing the survey. This article derives from audience participation. We hope to add detailed descriptions of how nerve injury feels in the various organ systems and areas of the body. This will help give the range of sensations that can be experienced. Please send your descriptions to comments to this article. Include things which relieve the pain. Comments do not appear unless they have been edited. Names will be withheld unless you indicate otherwise.


HOT TIME IN THE COLD TOWN TONIGHT

I have a conflict between trying to avoid burning from touch AND burning from cold. If you address one, the other gets worse, and vice versa. I would burn from heat too, but I stay out of it. Then the problem is reversed, because the air conditioning burns my skin, but the air conditioning is there to keep me from burning in the heat. I think all these systems are different in the body, and so in central nerve injury, they work against each other, with me as the battlefield.

The burning to touch is not the same over my body. It gets worse in the parts of my body at greater distance from the spinal cord, for example my feet and hands. I have CP on the face and there too, it gets worse as I go away from the brain. The tip of my nose, my lips, the end of my tongue all burn considerably more than the parts of my face closer to the cord/brain.

I would not expect anyone to understand my burning who hasn’t had it. It generally agrees with the description here of acid sprayed just under my skin. It has a chemical feel. The reason I cannot just say “acid” is that the sensation is mixed. Although the burning is definitely there, there are other sensations too, such as cold and wetness. I am not aware of the extra sensations unless I really think about it, since what I feel what I call a “sick” burn, which means it burns, but something is wrong. If I then focus, I can pick out other components. When I was normal, if I got sick and had a fever, the fever had something in it, that I knew it was from the sickness. That is what I mean by “sick” burn. ‘

Sleeping is nearly impossible. I have severe mechanical pain in the joints around my area of cord injury. Pain from a full bladder or in the rectum, can awaken me. I have a burning from the touch of sheets. I do not use real sheets, but a satin throw. I cannot endure touch to my legs, so I keep this one throw over the parts that are less sensitive. During the night, the room cools. This cooling makes my skin burn, ferociously after a while. I awake from the burning, but the coolness of my back, where my dysesthesia is less, tells me I am actually cold. If I put another cover on, I burn from touch, so to compensate for the cold, I put a down pillow against my back. If I put a cotton throw over the satin, it burns more, so I pull several folds of the cotton throw against my back and can sometimes go to sleep. The heat is shut off in my room because I cannot stand any hot air moving against me. In cold winter, I use a radiant heater across the room which does not put hot air on me and helps with the chill.
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I HAVE A GUT FEELING

The Central Pain in my gut is directly related to overfulness, or the feeling of overfulness. It is not necessary for the gut to actually be overfull, only to have something in it, even if it is gas, and then I have the symptoms. These are mostly nausea and pain, like you would have if you had stomach flue or diarrhea/gas. The nausea and gut problems go through cycles. I don’t know what causes this. Sometimes I am so hypersensitive that anything at all in my stomach will punish me. Other times, it is not as bad. Just like any gut pain, if I try to move or travel, the bouncing can set off worse paina and nausea. In line with other parts of my body which burn, I actually have less sensation in my gut, despite the pain and nausea. Early in the disease I soiled myself all the time because I couldn’t tell if it was gas or stool at the rectum. With time, I learned some clues, so now I dont’ have as much problem with soilage excetpt when I have diarrhea. I cannot wear clothing to much extent so I have a dread of being in abbreviated clothing and having stool fall out if I fail to realize it is pressing at my rectum. This fear would be much less if I could stand to wear underwear. At night, I wake up sometimes just with a tiny bit of stool or gas at the rectum. The pain can be terrific, like there was a cannon ball trying to get out, and last a long time after evacuation.

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RULED BY MY BLADDER

Since I got Central Pain, my bladder drives me crazy. It varies a great deal. Sometimes, I have to empty my bladder every five minutes if I am to deal with the burning. Other times, it is not so bad. The odd thing is that there is often very little urine in my bladder (a few drops) even when I have a tremendous need to empty it. There is kind of a threshold where the burning really gets me. I can be doing okay and then suddenly, I really need to void. The burning in my bladder comes on so quickly I must carry a receptacle if I am in the car. This can be very embarassing if there are others in the car, but I cannot really bear to wait. When the urine hits the end of my urethra there is burning there, but the bladder relief makes me glad to void anyway. There is always some burning in the end of the urethra, which is maddening if I allow myself to think about it, but my feet burn so much worse that I don’t focus on the urethra that much.

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WHERE AM I?

I have a lot of what is called “atopoesthesia” at this site. I can’t really tell the position of my feet and legs, so I always have sores and scars on my lower legs. I do not feel sensation easily so I may drive a nail clear into my foot before the pain tells me I have done something bad, and then the pain is wild, very severe. At painonline.org they call this “delay with overshoot”. I bump things and hit things as I shift my body. I can’t tell where the actual surface of my skin is located, and I rely mainly on a feeling of acid burn to tell me where my skin surface is, but it is not very reliable.
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DRIVEN NUTS BY PINS AND NEEDLES

Since the only time I have felt this is when my circulation has been compromised (before I got Central Pain) I have assumed my pins and needles now are related to the blood vessels. I tried to read on the nerves that go to blood vessels and I think they are called visceral afferents, but I am not sure. Some authors also said there are autonomic nerves in the vessel wall, so I don’t know which kind is causing my pins and needles. I noticed early in the condition that I couldn’t even put my arm down without kicking off pins and needles. Now that I have slowly lost more sensation to touch, I would not be able to recognize that it was compromise in circulation that is causing my pins and needles. The whole business creeps me out, and although it is not really that painful, pins and needles drives me crazy.

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THALAMIC STROKE

I read here about spine injured people who have pain in the legs that is worse than in the hands. In me, it is something different. I have the pain just on the left side, all over that side and on the right side of my face, from a stroke on the right side of my brain. The crossover is right behind my jaw line and also sort of goes right through my ear canal. I seem to have the same sensations as others report here except I am very sensitive to temperature on my skin. If the car air conditiner blows cold on my legs that gets to burn very quickly. Hot air does it too but then it is slower and kind of a feeling of heating on the one side of my body. I also cannot tell very well where the surface of my skin is. I am glad I can still have normal sensation on the right side of my body, because it helps me to remember that is the real me. If everything felt like the left side, heaven help me. The burning pain gets much worse as you go toward the ends of my arm and leg, or toward the center of my lips or the tip of my nose. A needle feels extra sharp on my shoulder and anywhere on my foot and lower leg.

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NO THANKS FOR THE LOST MEMORIES

I remember when Intel started to put multitasking on their computer chip. That is what I cannot do. Everything is coming at me too fast. If I try to do something and someone talks to me or speaks to me I can’t remember what I was thinking. So I make lists. I still have no “working memory”. I need to have my old brain chip back. I am very forgetful and have lost muscle memory too.

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WHAT DO I DO NOW?

I am about to turn into a big bag of mush. My muscles are so sore and hurt so much that I just cannot bring myself to move. A lot of learning has gone on in my body. My muscles have learned pain avoidance too well. If something falls to the ground, it stays there. The pain of retrieving it is too much. Brushing my teeth makes me hurt so much I neglect that. Every movement exacts its price. My muscles jerk or spasm when I lay down and at other occasions too. Any sort of position that involves anything but relaxation may send me into spasms of the muscles. Every event feels like it comes at the end of two or three marathons in one day. I cannot fall asleep and I cannot stay awake. Sleep is in little bursts so

I am always getting very tired and the pain wakes me up almost immediately. My sleep is spread out over about one half to three quarters of the day, just to get a few hours. All the time, it feels like somone has taken a baseball bat to every muscle, the soreness is beyond description.

In Greek mythology, there are different punishments meted out by the gods, such as the guy who keeps pushing a rock uphill only to have it roll back down, so he has to keep doing it forever. But nowhere do you find anyone with severe chronic pain, because the Greeks oould not imagine such a thing. It took Medieval religionists, who knew a lot about inflicting pain on heretics, to begin the idea of burning in hell. They alone could imagine torment such as visits me.