This is a collection of some of the comments I have received from people describing their central pain. If you feel you have something to add, please drop me an email. Some of the comments have been lightly edited, but only for ease of reading.
Warning: The graphic descriptions of pain on this page may be an intense and possibly disturbing experience for some people.
For me central pain feels like being wrapped in aluminum foil, broiled for a bit, then the foil is attached to electrodes where low voltage is constantly being fed to create a feeling of being wrapped up in electricity, buzzing like a computer that never gets turned off.
I once again had a taste of what hell must be like. Pain, pain and more excruciating pain. Starting from the elbow down into the hand. One jolt after the other, like an electrical shock applied through a knife cutting into the flesh, over and over again. Visualize a sadist with an electric carver, connected to the mains, slashing away, twisting and turning the infernal thing, grinning with delight as I squirm away.
The rest of my pains all fall into a clump: tingles, shocks, pulling, aching, tugging, burning, all at the same time in different parts of the body. It is most un-nerving (no pun intended). All of these things make everything you do in your life, a little differently, you walk differently, carry things differently, lift differently, turn differently, etc. Which leads to step three for me, moving differently in everything I do, therefore makes other parts of my body hurt, because they are being used in ways that they were not really meant to be used, or different stresses being put on joints from what used to be “normal”.
I never was able to accurately describe to my M.D. just how bad the pain was and I figure that was the reason he didn’t prescribe anything stronger for the pain. One day I called the M.D. to get my pills refilled as I only had one left. When I called the Pharmacy that afternoon, they said he wanted to wait to fill it because I had an appointment the following day anyway. That night almost killed me. I can’t begin to describe the pain. The next day at the doctor’s office I was in pieces and broke down in front of the doctor I think that was the first time he really realized just how bad the pain was.
I feel like I am kneeling on large pieces of glass. I take Neurontin, and have had the feelings in my foot, but few and far between, now. The “glass” I am kneeling in goes from my knee to my calf, and from my knee upward to my thigh. To a lesser degree, on to my stomach, my back, chest, and arm. I just did it by kneeling on carpet, it is a lot worse when the surface is hard, like my kitchen, or getting out of the pool. Recently, I feel down at the grocery store parking lot. I wouldn’t have been able to get up without help. This was scalding broken glass. It was 115 degrees and I’m sure the parking lot was a lot hotter. Thankfully, a man came to help me and picked me up.
After reading your site, a few phrases of my husband’s regarding the pain he is suffering sprang to mind.
“Imagine having really bad sunburn on your legs and multiplying it by a thousand, you might begin to understand how it feels”
“It’s like having battery acid poured over you.”
“I feel like I’ve been plugged into the mains.”
“My legs are numb but are burning.” (This gets a few raised eyebrows)
In describing my pain to doctors, relatives and friends, I feel they look at me totally unaware of what I am saying. I guess it is hard for someone to understand what it feels like to have pain that feels as though your flesh is being ripped apart or feeling
like something is ballooned till it feels as if it is going to burst or the feeling that you have just been struck by lightening and can feel the jagged strike as it hits your body or that there is a fire coal sitting in your body, red hot and as searing as a branding iron. Pain that stops you dead in your tracks and you scream in agony and no one can help, not even you. Pain that makes you wish you could die at that very moment, because it is so unbearable and you know it will stay for a minutes, hours, possibly days or weeks and when it calms down, you know it will return. You wonder if it will one day stay in that state and not ease off to a tolerable level, you are terrified that it may get worse.
I have had 5 hernia repairs, inguinal, femoral and abdominal. I have had six other abdominal surgeries all in the pelvic area of which three were to remove adhesions and sever nerves to try to kill the pain. The surgeons failed to tell me the consequences of severing the nerves. When I returned in more pain than before, I was told to go to a pain clinic where they could teach me how to deal with the pain. It was there that I was told that the damage had been done and there was no help available. I am left to suffer from debilitating pain and the terrible feeling of being drugged all the time and the pain still becomes so severe that I scream in agony.
At times I experience a pain that feels like my brain is tearing apart, but the doctors keep telling me there are no nerves on my brain.
To date my symptoms have been:
Left sided Hemi-Corporeal Pain (a name given by my Pain Management Specialist): I take this to be the awful crushing, cutting sensation in my arm and leg (left)
Severe cold burning sensation , not unlike a sunburn feeling (I liken it to constantly having an ice-block against my skin).
Pins and needles in my fingers and toes (like holding a handful of pins, standing on pins) making it difficult to touch anything, or stand.
Crushing/lacerating pain on the whole left side particularly the arms and legs.
Hypersensitivity – extreme when subjected to cold and a light touch (even the feeling of air generated by a fan) increases all of the above.
Emotions – especially sadness or a sudden self-protective movement increases all the above symptoms.
Spasticity in arm and hand. Pain is extreme when these joints are straightened.
Stabbing, burning, shooting pains across my torso area from left to right. Sometimes a tight “banded up” feeling, like there is a tight rubber band across that area. It takes my breath away. Mine is also complicated with muscle pain.
Too much pain to explain philosophically and it doesn’t really matter. What matters is that, as you so very well put it, “severe central pain is incompatible with maintenance of the true self.” I mourn for the loss of what I thought was my true self. Only by honoring and knowing that I do the best I can under the circumstances, can I stop the continual rape and revulsion of what I’ve physically become.
Some months back, I lambasted in a letter in a letter to the editor that central pain is never mentioned in newsletters, that they seem more inclined to write about the more conservative pain treatment measures (exercise, blah, blah..) and what about those who are sequestered away in nursing homes, VA hospitals…with central pain? A medical doctor parroted straight from the archaic National Institute of Health’s definition. I know the definition-I’ve seen it. And he made a big mistake, which, of course, was set in bold letters in the reply…”Central pain is not fatal.” I beg to differ. I know you know what I mean.
I am on my third pain management physician and still do not feel compassion or understanding because of the bizarre nature of my pain. The burning is of course a given, but it’s not the worst “component” of my distress. It is the twisting, pulling and crushing in my lower back and both legs that makes sitting so painful. I lie on my side in bed and feel a little relief, though all components are spontaneous. I constantly think of suicide and when I search for reasons beyond the pain itself, it is the isolation and lack of outside.
An open wound, bleeding (I actually feel like blood is flowing), and someone is blowing on it.
My CPS is stroke related and my best description is “Take the worse sunburn you have ever had and triple it.” I have this on all skin surfaces on my left side. From the tip of my tongue to the soles of my feet. I also have the tight skin feeling. Like your skin is too tight to fit over your body. Stress or a drop in the barometric pressure makes it worse.
It started in the base of my neck and has traveled to my hands and feet, burning swelling sweating 24 hour a day 7 days a week. There has been no pill or shot to numb my CNS that has worked and I am getting worse. My attacks, as I call them are coming more often, the jerking of my neck is getting stronger with each attack. I had an attack last week which caused the left side of my face and my neck to jerk, causing me to bite the inside of my cheek. My hands and feet burn and hurt all the time with every touch and every step.
Symptoms include-EXTREME allodynia at the base of my neck. I cannot bear the lightest touch on the area .The pain feels like raw flesh with vinegar poured over it, but you cannot run or sooth the discomfort which may last for several hours. Sometimes the pain intensifies for no apparent reasons though triggered by -Wind, Clothes Sweat Sun and Temperature Vibrations and basic Movement. Pain in both eyes!, A hot wire sensation in both Ears.
Two years ago I was diagnosed with Cauda Equina Syndrome and had emergency surgery. Its been living hell since. Been trying everything to get relief. Doctors give me no answers for my pain. I’m about to go crazy. I have severe burning pain in left thigh and now starting in my right thigh.
I also have forgotten what normal feels like except in dreams. Sometimes I awaken to realize that there was no pain in the dream. I have cold burning sore tender pain in my feet which sometimes prevents walking and is always very PAINFUL. I have sharp shooting pains and ceiling fans cause a cold burning on my arms. I have bowel pain which I thought was from adhesion surgeries but my feet are what hurts more so–yes—I say stop the burning. I cannot stand my weight on them and light touch is worse than heavy touch which doesn’t make sense!
I have had four cervical surgeries, but now the pain is worse than before. I have this horrible pain from my lower back. It is worse when i lay down/ can’t sleep and am sooo miserable.
The most bizarre pain was the feeling that the interior structure of mass inside my arm, leg, head or foot is turning to hardened concrete, and in doing so is cracking…from there the pain (mostly burning or electricity) emerges. Recently I found that deep bass sounds (like from a sound system subwoofer) create intense painful sensations… especially in my toes and the bottom of my foot, and also in the left forearm.
I describe it as a naked flame from a Bunsen burner constantly ‘burning’ my flesh on my calf muscles and lower back. It is hard to describe, and without medications I fear I would not be able to last a week without it being too much.
I can be cool on the left side and burning on the right. I can even be cool on the out side of right side and burning on the inside.
The overfull feeling in gut is WEIRD! This has been happening to me lately; I eat like five bites of food and feel full even though I’m still hungry.
Curiously, I don’t feel the burning as I sit and type right now-only the crushing intensifies. As soon as I lie down, the burning will increase.
I am SO glad to see you write about the pulling and drawing type of pain! I haven’t found many others who have this and I have found NO doctor who understands what I’m talking about. The pulling makes me feel as if my lower body is being smashed into my upper body. Sitting especially increases the pulling.
I’m trying very hard not to give up, but sitting is becoming so unbearable that I don’t know how much longer I can hang on. I’m grateful to know, however, that there are scientists/doctors out there who are genuinely interested in researching central pain. I have no doctor who really understands how severe this pain is and when I try to explain it, I get blank stares or uncomfortable shuffling.
I do not feel a pin prick any more in most areas of my body, its very dull if I feel it at all. Yet a touch of a cloth can cause my thighs to burn.
The pain is nothing one could have ever have imagined before its onset.
The pain began 4 months after my stroke. It began as a “pins and needles” feeling in the skin of my numb left side. Now my pain is well described as “take the worst sunburn you ever had and triple it, complete with the “too tight skin” feeling. I have constant burning pain in all skin surfaces on the left side (tip of tongue to the sole of my foot) Sharp pain if anything (from feathers to bricks) touches the skin. All my skin on the left side feels “too tight” all the time, but the only part that actually swells is my left foot and ankle. I also have shooting “electric shock” pains, mostly down my spine.
About 7 years ago, I used to make the statement “it’s only pain, it can’t hurt me”. I could not have been more wrong. It has spread like a very bad virus, and now my entire body is effected by these many insufferable sensations. What began as a centralized, almost easy to locate pain, has spread to include every part of the body. I also feel like I am plugged into an outlet. I “buzz” much like my computer does. This noise gets louder the quieter I get. After exercise, muscles that are used have what I can only describe as fireworks.
My numbest areas are the most sensitive to light touch. I have had to resort to the “luxury” of satin sheets just so I don’t wake up feeling as if I was in a torture chamber all night long. I have shooting electric pains that will actually force me to jump! Sometimes everything goes blank, and I just see white light at the same moment. And, MY GUT BURNS!!!! Makes period cramps (and I used to have doozies!) feel like a walk in the park.
There are so many bizarre and embarrassing sensations that I find myself not only afraid of ridicule in trying to explain these, but of not being believed. But how could anyone make up such bizzareness?
My pain is like a burning, “Pac-man” cannibalizing my nerve endings kind of pain with the additional feeling of my nerves constantly being rubbed raw by sandpaper.
I feel so isolated, at the moment every waking moment is torture. I can’t even remember what it means to be pain free, or what ‘normal’ pain feels like.