The iPad tumblr client has quit allowing you to search for posts with the word ‘pain’ in the tag.
First it was stuff it considered sexual or porn related, even when they were gay and lesbian community type stuff rather than porn. Which was offensive, but I followed the twisted logic. But WTF is their problem with pain? Now I can’t read the chronic pain tag with this client.
(I know there’s other clients, but this one is the one I find easiest. And none of this censorship stuff is remotely fair. And they’re doing more of it. I used to be able to read the chronic pain tag.)
For my own and others reference. This is what I look like with bad joint and nerve pain. Fuck.
I think its the IV sensitizing my entire body to nasty nasty pain.
I am a frustrated writer. But not the usual kind I guess.
Ever since before I went into the hospital last fall, there is an article I have wanted to write. It is an article based thoroughly in love. It is an article describing life and death issues. It is an article that could be written from many positions. But I am in a relatively unique position to have knowledge required for the article in my head.
I will not describe it further, because the last thing I need is to reveal the contents before the article is finished. Describing it in summary is not the same as writing it and would draw reactions from those who imagined they knew what it was about (and failed).
Last August I stopped eating all but broth and tiny amounts of grits. I then aspirated, as happens much more often with every passing year. I was weak from not eating. I got aspiration pneumonia. I became severely delirious. I was admitted to the hospital and treated with huge amounts of IV antibiotics. This made my stomach even sicker. After the pneumonia was cured, they worked to diagnose and treat gastroparesis until I could come home.
I was in there about five weeks. I was still severely delirious upon arriving home. I went in and out of it and stayed really bad until I worked out my own cognitive rehab program and pulled myself further and further out of delirium by my fingernails. I taught myself to read books starting with young children going all the way to adult. I can still tell my cognitive state by whatort of conver kind of books I can read.
Writing has proven harder. You may see me writing things like this. But this is more like talking to someone than the kind of article writing my main blog relied on. My main mode of verbal communication is writing at this time in my life. Writing as communication is not as hard. But other kinds of writing are totally different. There are many kinds of writing I simply can’t do, or can only do right when inspiration strikes, and that is not good enough for what I want to be able to do.
Delirium is a kind of brain damage. I have had delirium every hospitalization over the past several years. My durable power of attorney has done some reading and estimates it may take two years to regain my previous cognitive skills, if I regain them at all.
Delirium in me seems heavily tied to pain and nutrition. The more pain the more delirium. The less food the more delirium. With gastroparesis I’m having real trouble even with my liquid diet of Ensure. My pain level has been high. Hospitalization makes my delirium far worse and I’ve already been hospitalized once more for gastroparesis. Delirium is a spectrum from mild cognitive dysfunction to severe loss of contact with reality, and usually has an in and out pattern like you can be lucid one moment not the next. And it’s always caused by some sort of illness, pain, etc. So I am actually experiencing a mild degree of delirium right now, in that I haven’t fully recovered my cognitive functions.
Also I am affected by an ongoing loss of energy that threatens to suck me in like a whirlpool. Every time I am hospitalized I experience severe exhaustion beyond what any healthy person and even many chronically ill people can imagine. Then I have to climb back from that. In the past several years, I haven’t climbed back before another hospital stay or major illness has happened.
Since January I have had to be on antibiotics four or five times for aspiration-related chest infections that verged on but did not become pneumonia, always in extra danger because I have bronchiectasis. I also got a head cold that would have been minor in a healthy person but very much set back my recovery.
These things keep happening. Drains on my mental resources. Drains on my physical resources. And mental resources are after all physical so they are affected by drains on physical resources — that’s how delirium happens. It feels like it may never end.
And in all this I am unable to write that one article. The article that I feel perfectly positioned to write. The article that I have never seen written yet, that could really help a lot of people. A very wide range of people.
It means so much to me to write this. Not for ego-related reasons. But because someone has to write it and here I am, perfectly in place to do so. To my knowledge, people have skirted the topics but not written the same thing.
And I can’t. Not right now. I’m frustrated. Granted I’m sick and infected and been sleeping all the time and can barely read children’s novels. But still. When will I write this? I don’t know. I don’t know anymore if I’ll ever write it. I feel trapped and discouraged and frustrated by all this.
I know I may eventually write it. Maybe one day I will realize that even if things aren’t getting better, I’d better write it now instead of assuming there will be a “better time” I can write it. I don’t know. I have no idea.
I’m just frustrated that nothing I do seems to produce the article I want to write. Maybe this frustration is pointless. Maybe I need to find a way not to be frustrated, or a way not to care about being frustrated, whether I ever write it or not. I don’t know. I don’t know.
My DPA gave me an answer.
For how to handle the clusterfuck of various health crises all converging on me.
She said fear and hopelessness wastes energy.
Instead, she said.
Resign yourself to the fact that there are many possible outcomes. From the best all the way to death. Don’t feel scared and hopeless about any of them. Just resign yourself to the fact that any of them could happen.
Then choose what you want to happen, within reason. And become absolutely determined to work towards that outcome no matter what.
She said once when she had almost no energy because she was dying from a botched procedure. That absolute resigned yet determined mode gave her a second wind that allowed her to fight to get treatment and save her life.
If she’d been scared and hopeless about it and stayed that way, she probably would have died. No energy to spare.
And I understand that way too well. When you have so little energy that breathing becomes difficult (enough to need mechanical assistance) if you over exert yourself by, um, going outside? You start understanding how indulging certain feelings can make you feel worse, or even kill you.
So I can see what she means. I suspect she’s right. I’m going to try it. I’ve become tired enough that resignation is easy, and she said that’s a good sign — while you can look at this logically, this is more a soul thing than a head thing.
Hospital pain isolation hell alone everywhere
Can’t even think. Pain surges into different body parts — crackling and burning, worse on any part touching the bed. I turn over and my arms and legs hurt with the effort, and now it’s the other side of my body that’s hurting now. I constantly shift my own position, make the front and back of the bed go up and down, or use pillows, but things only get worse.
But that’s not the only pain going on. My entire spine from my neck to my butt is on fire. Turning my head makes pain show up in my shoulders, arms, and even legs. On the right side of my neck, muscles spasm, and if things aren’t taken care of regularly (such as nerve blocks), spasms can travel down that arm. Cold IV fluids going up that arm sometimes trigger spasms.
My joints all hurt as well. They’ve hurt for years and only one possible reason has been found. It’s not arthritis. I learned to stop mentioning it until I was examined for joint hypermobility syndrome, which causes my joints to bend too far, causing more wear and tear on various parts of the joint. Like the time I picked up a book and sprained a finger into a permanently different shape. My joints all ache a lot though. And sometimes have such sharp pain I’ve had to wear braces and stuff. Sometimes my hands and feet feel like something inside is popping out of alignment, causing a sharp intense pain that only lasts until my embarrassment at having no current way to answer “What’s wrong?” Then there’s a dull but intense pain that lasts an hour or so.
Something about my legs makes it so that when I could walk better, ankle braces kept me (mostly) from feeling like fire or lightning was traveling up my legs when I walked or stood.
I have some kind of central or neuropathic pain. It causes pain all over my body that feels like burning and sometimes ice at the same time. It’s some of the most intense feeling pain I have ever had. It never goes away. Sometimes it’s worse in my arms and legs. Sometimes it’s worse in my stomach and intestines. It can take ordinary heartburn and make it feel like someone is pressing a sheet of metal onto my back, like a hot iron, or a cold so intense it burns.
I get plenty of pain in my digestive system on my own without the neuropathic pain. I get a lot of heartburn. I have a paralyzed stomach, called gastroparesis, and that causes all kinds of pain. Especially from gas and bloating. My stomach turns hard as a rock. I also get a lot of bowel blockages through severe constipation, and even the minor partial ones I can deal with at home get very painful.
If the gastroparesis has been making me throw up, or bronchiectasis plus lung infections or pneumonia have been making me cough, there’s lots of potential for pain. Coughing and throwing up can pull muscles in all sorts of locations. They can make all breathing hurt. They can bruise, dislocate, or break ribs.
And for some reason, for me, breathing often hurts a lot all on its own. So do a lot of other normal everyday activities. Chewing. Swallowing. Having stuff go down the esophagus. Touching anything, even clothing or bed sheets. Being bathed. Moving any body part. Sitting or lying on anything other than thick memory foam, gel, or aan equivalent.
I have specific locations for nerve pain as well. I have trigeminal neuralgia, which causes intense pain on one side of my face. Sometimes it’s intense background pain. Sometimes it feels like lightning traveling down my face. Eye movement, cold air, and touching certain parts of my face trigger it.
This isn’t an exhaustive list of the kinds of pain I experience. It’s just an explanation of why, away from my bed at home, and unabletv to swallow my Lyrica and Trileptal or take them IV, my pain level quickly skyrockets to something unendurable.
But as I lie there, with every move I make an attempt to deal withe the pain, every move my brain makes is an attempt at denial. The bed is just uncomfortable. The writhing and moaning or screaming? Maybe a med reaction. I begin to wonder why only I and a small number of other patients I know of, are making noise because of pain. While other people are relaxed, holding conversations, smiling and being sweet for everyone. I can’t. I just can’t. And it burns me up that whatever my intent I can’t be a pleasant sort of patient. I feel like I must be weak and weakness is bad.
Delirium always accompanies pain for me, so at minimum my thinking gets foggy and at maximum I get hallucinations. It feels like my mind jumps off cliffs. If I can cling to the cliff I can think a little. But if I jump off I end up in a weird repeating place of things I either don’t remember, or remember only bizarre visual hallucinations.
Meanwhile the pain is still there. What pain depends on why I’m in the hospital and other factors of how my life is going right then. If treated, sometimes the delirium vanishes when the pain does.
Communication with others becomes hard. Even typing in my iPod Touch or iPad seems to hurt like hell and every letter is a strain. So it’s hard to say anything even if I hit the call bell.
They always want to know things about the pain. I can’t tell them. It is so many things. And the pain affects my cognition. And I hate the pain scale because the levels between 8 and 10 are this gigantic landscape that dwarfs the rest of the scale. And I often want to refuse pain meds because of nausea, when it would be better for me to take them and chance the nausea. Plus people get annoyed you used the call bell even for a legit request, and are impatient with a slow communicator. Sometimes they try to force me into yes/no questions just to speed me up when the world doesn’t work that way.
And so I lie there. In so much pain every second is torture. I’m not exaggerating right now. Hell, I’m leaving things out. And when I can think, I find half-assed ways to rationalize it to myself.
“The hospital is so busy. To them I’m not a person. I’m a bed. If I act like an unperson, maybe other patients will get the treatment they need without me slowing them down. If I’m an unperson, this pain doesn’t exist, it only belongs to a person who isn’t real. I’m not real anymore. I don’t matter like the good patients matter.”
And on like that. I survive those situations only by happening to exist long enough to last through them. I go without most of the pain meds I’m allowed to have. I twist my brain into knots. I cry myself to sleep. And I can say nothing for it other than it’s miserable.
I finally told my DPA about all this. She hadn’t realized quite how bad it had gotten. She has done her best to make sure I get truly good pain management in there.
I still have nightmares about it. Of lying there too weak to turn while the bed digs into me. And believing I was somehow being the best patient I could be, by never using my call button even if I couldn’t stop myself crying or throwing up or screaming or moaning or thrashing or writhing c or whatever. Like the best I could give them was not complaining while my body complained every second of the day without my consent. It’s so stupid and I do it every time.
It also scares me. To ever be in that much pain again. I can remember during one of my blockages lying there semi-delirious and wishing I could die. And I am not prone to depression these days. Those thoughts just happen. We don’t always act on or even discuss them but they happen. Trigeminal neuralgia was even nicknamed the suicide disease, before treatments became available. I don’t of course want to die for real, but it’s a thought people have when they feel like they have no options.
I can’t get the feeling out of my head. I think someone might have been right when they suggested PTSD flashbacks. An additional element of helplessness here is that at the hospital they always move my wheelchair into the hall, and in hospitals I’m always too weak to wall that far. So I’m literally trapped in the bed when this is going on. Something true of some but not all patients.
And I’m somehow sure I’m not the only person. It’s such a lonely existence but in a hospital you’re surrounded by dozens of people it might be true of. At times they even isolate you further — move roommates who don’t want to hear the moaning, they are very considerate of the effect you’re having on other people, but not necessarily so considerate that you are a person even when you can’t communicate because of pain.
Some people are wonderful of course. Some nurses can work wonders with pillows and dry heat and stuff. But most often, pain with accompanying delirium has turned me into an undesirable person. The kind they mutter rude things under their breaths about because they think you’d never understand. Most nurses of course are between the best and the worst, and most of all, busy and understaffed. So even some very good ones will at times ignore you as an unperson because the system forces them to view you by how easy you are to treat.
And that’s how you get the horrible isolation of level 9-10 pain, delirium, and being seen as nothing more than a lump of flesh connected to an IV pole that needs changing at times. All other requests take 45 minutes from the time of hitting the call bell. So if you can’t sit up that long waiting for help wiping your butt, go to bed unwiped and develop a fungal infection around that area. Which itches terribly but you can’t do anything about it. Which is just one more crappy thing about being there.
I’m not writing this to whine. I’m writing this to give some idea what our wonderful modern hospital system can be like to someone with chronic pain and multiple disabilities and chronic illnesses. I want people to know because I want a way to do something about it. Not just for me but for others. I am always aware of it in others while I’m there and I know it’s just as bad or worse. I can’t stand it. Even when I’m gone, it’s like a kind of pain I carry around with me everywhere with the knowledge of all the people it’s happening to all over the world, from the best hospitals to the worst.
If finding the right word involves writhing and screaming and squealing and typing ALL AT ONCE, you might be in pain.
Brief body overview
Now I am under blankets, curled up, somewhat cold but still cozy. Bed is not a bad place to be when it’s 20 degrees with wind I can hear whistling by the window hard enough to move my curtains with the window closed. Especially since I just got bathed and that was cold.
Completely worn out from the bath though. The kind of worn out where my eyes are half shut and my bipap is making me less out of breath. I wonder if nondisabled people even know what this kind of worn out means. My guess is it’s hard for them to imagine even while exhausted, because it takes it to a different level. It takes less to wear me out, there are many different kinds of being worn out both local and global, and the fact of being worn out happens in more extreme ways. It makes accurate communication about it very difficult.
There’s also pain. The stuff I’m thinking of is maybe on the severe end of moderate, or the low end of severe? It’s still joints, like last night. From the cold probably. And from all that bending and turning for the LNA. I don’t have arthritis that I am aware of, but I have plenty other reasons my joints don’t like me.
And there’s something I actually want to write about, but maybe better make it a different post.
Lots more about pain.
So yeah. As described, I was in much more pain than I thought I was.
I get so confused. The more pain the more confusion, until I don’t know I exist at all sometimes.
And it’s confusing to know what to do. How much to say before people say enough is enough, get better or else. Except I’m not getting better very quickly.
And that would bother me so much less without the expectations. I can remember back before my first nerve block. When trigeminal neuralgia and central pain had combined in this unholy union that had me regularly contemplating suicide.
And I was lucky. I was lucky to have a friend who let me live on her couch. I was lucky she’d do all-night movie marathons to give me any distraction at all before I fell asleep from sheer exhaustion on her bedroom floor.
And I remember the short-term numbing meds they gave me to test and make sure it was the right nerves. And I remember all three branches of my trigeminal nerve being in constant agony. But they numbed one. Just one. And it was like the world had changed.
Suddenly I was a part of the world. I was connected to things. It was amazing. And then. And then the numbing meds wore off. And I felt like a huge door between me and the world was slamming shut and locking. And I was just trying to find a way to peer through a tiny window in the door. And I couldn’t stop crying.
My friend said before that she didn’t know chronic pain could be traumatic. And she’s no stranger to pain myself. But she said my eyes changed, suddenly a thousand-yard stare instead of whatever they looked like before, and she knew what that meant. She did her best to make me feel better but I felt too distant to feel anything. Which was almost worse than the pain.
I was thinking about suicide constantly and trying not to let on. I knew a psych ward would be terrible for me in that amount of physical pain. Only my closest friends knew. And they also knew I didn’t really want to die. I just wanted the pain to stop. I knew I was going to receive treatment. But I still kept getting these urges to jump out the window. I held on just by living moment to moment, because the urges were so far against what I actually wanted. Sometimes the brain starts sending out those impulses when people feel trapped in a corner.
Since then I’ve had several other time periods where my pain level stayed 8 or above for the most part. Most of my hospitalizations have been like that.
Severe delirium, for me, is always accompanied by severe pain, often even a 9. It’s pain you can’t run from, can’t do anything about, and in my case can never localize. I feel it everywhere and nowhere at once. My DPA had a brain injury once and she thinks that since delirium is brain damage, maybe it causes the same weird kind of pain she felt when she was recovering. A kind that doesn’t seem to be any specific place but is so severe it just consumes you. At any rate, I spent a long time with that pain at the hospital, with nobody doing anything about it. I was often unable to communicate so they ignored me.
I can’t describe how it changes you. It’s like being ground down every second. You survive because you have no other choice. Not because you’re tough. Just because you literally can’t do anything. You can’t even think well enough to plan anything at all.
I’m afraid of it still. Sometimes I remember it and start crying like I’ll never stop. I remember the parts of me, walled off. I suddenly fear those walls. And this feeling of exposure to everything in the world, like I was shattered to pieces and the world came in the cracks. Or I was disintegrating and blowing away into the sky and was I dying?
And time seeming to act weird. Crawling by at a snail’s pace but suddenly missing hours and days and weeks. That was one of the worst parts because it made the pain seem forever. At that point, the only thing I could turn to was a wood carving of Sekhmet my friend gave me. She has a well-deserved reputation for fierceness — but that fierceness and toughness is what you need when you’re in so much pain you think it will break you forever. And somehow it worked. It was the only thing that got me through experiences that felt like they were destroying me. I don’t care if the intense, somewhat intimidating lioness who took care of me while I was in the hospital was a delirium hallucination or real on some level — She did for me what no human being was able to do and I can’t possibly not be grateful.
And so that’s where I’ve learned to turn when things get that bad. And it’s got me through the worst of the last… however long it’s been since the nerve block. Again I experienced a 9 on some days, complete with delirium and passing out before I could reach ten. There’s a point past which all I can do is ask a god for help. And they do help. The pain stays, but I get through it a little better than I had been doing. They help me stay connected to the world.
This doesn’t mean I don’t pay a price for being in this much pain all the time. I wish I could describe that price better. I don’t want anyone to feel sorry for me, you understand. I just want people to understand that pain isn’t something to take lightly.
Sometimes I feel like parts of my body belong not to me, but to pain itself. Pain does its best to destroy my relationship with my body — with myself. My mind starts shutting off large chunks of itself that would normally be there. My feelings get warped. My entire life, I’ve had a personality partially shaped by pain.
Sometimes it makes me feel strong. Sometimes it makes me feel weak. Sometimes I cry, sometimes it hurts too much to cry. Sometimes all I do for hours is lie down curled up in a ball. Sometimes I snap at people who don’t deserve it, at home or online.
Often I distract myself by constant mental activity until I can’t anymore. Like reading or watching videos. And then when I can’t anymore… my body is flooded with even worse pain, from head to toe, and I can’t do anything about it. Sometimes I dissociate. Sometimes I become delirious. Sometimes I pray. Sometimes I do my best to reach out my mind to the best parts of the world. And sometimes I can’t do any of those things, and just wait until the most hellish part passes.
Why am I writing this? Because pain is a secret. People don’t want to know, and people become afraid to tell. People hide it from friends, lovers, family, and doctors. People are taught that only the weak admit to pain. People like me — disabled people — get taught to hide our pain to make caregivers comfortable and convenient, and are taught that it is never as bad as it actually is until we ourselves believe it. Some people commit suicide rather than seek pain treatment because doctors treat them like criminals for seeking help, and because many doctors involved in end-of-life care don’t know some really basic information about how pain medication does and doesn’t work.
Many of my close brushes with death come down to not showing pain. The same is true for lots of other people with developmental disabilities.
But on a personal level.
I want to be able to reach out.
I want to stop feeling like I’m bad if the pain doesn’t go away fast enough.
I want people to stop treating me like my pain is best out of sight, out of mind. Leaving me with only a tiny support system to handle it with me.
Like I’m weak for admitting pain, when actually I’m so tough that it’s almost killed me several times.
When people wait for it to be over. I’ve had it my whole life. It will never be over. It gets better or worse but never gone. But people act like if we don’t get better fast enough then there’s something wrong with our character.
The worst is reading stuff by bad medical professionals. The ones who don’t want to deal with the fact that pain exists, so they turn it against their patients.
One guy (not my doctor, just a guy I know online) said, “I used to work in a pain clinic. I stopped after I realized that my patients refused to get better until they got their secondary gain met.” Secondary gain is a term that means something like, you get something out of an illness or injury, ranging from workman’s comp to sympathy. And a lot of medical professionals who can’t deal with the reality of pain, blame all lingering pain on the patient getting something out of it. Rather than realizing that pain treatment is not always going to be effective.
It enrages me. Most of my friends and family have chronic pain. And we don’t get a damn thing out of it but misery. Misery we don’t want, even if it somehow magically got us all sorts of material and social goodies.
Which by the way. It doesn’t. People don’t give you sympathy if you have chronic pain, even if I wanted it. Chronic pain makes people without it uncomfortable. And instead of admitting that, they take it out on the person who is in pain. Especially in societies that encourage selfishness and a survival of the fittest attitude. Or worse, that messed up new age idea that we all choose our own destinies.
But I’m tired of hiding.
I’m tired of downplaying it everywhere I go. And yes pretty much everything you hear from me about pain is downplayed, not exaggerated.
It’s not that I want to make myself hyper-aware of it by talking about it constantly — that can make pain worse. But I want to be able to be realistic when I’m near the end of my rope. I don’t want every conversation about pain to be filled with terror. If I’m in enough pain terror only makes things worse.
I want to be able to be part of the world with my pain. It’s not a part of me I enjoy but it’s part of me. And I’m always, always afraid to say how bad it is. Even when it’s literally a matter of life and death.
And I want people who know me, to know this part of me too. Not just the good parts. Not just the better days. But also the days I can’t do anything but lie curled up in a dark quiet room and cry. And the days when it’s too bad to cry. And the days when all I want is someone to sit by my bed and silently understand that I can’t type but I still could use the company.
And I want to have friends who are there even if it never gets any better, even if it gets worse, who won’t blame me. And for people who aren’t friends — but who at least understand. And for people to not find me useless even if I never write another essay on disability rights or other political topics ever again. Who can let me be human and weak without trying to force me to be anything I can’t be.
I still remember how shocked I was. I was getting a nerve block and there was a long wait before I could get the procedure done. And I told them I didn’t mind waiting but could they tell me how long the wait was because if it was more than five minutes I’d need to lie down on the floor. I was trying to do everything I could to accommodate them and shape myself into something they could deal with, even with searing pain.
So imagine my surprise, when they said “This is an emergency then” and went and grabbed everyone they needed and did the procedure immediately. They actually understood that a person whose face hurts so much they can’t sit up, is in need of immediate treatment, not just a floor to lie on. I am used to accommodating everyone else about my pain and they accommodated me instead, and I was so surprised and confused.
I’m still perpetually surprised when things like that happen. And I know I shouldn’t have to be.
And I know that most people see hiding pain as a virtue and showing it as almost… sinful or something, even if they’re not religious. Medical professionals are no exception. And it shouldn’t be this way. It isolates people with severe chronic pain, makes us sound weak, contributes to all kinds of problems, even threatens our lives. And untreated pain is actually terrible for your health but people who don’t get treatment are praised, people who look for treatment are often treated like criminals unless we are lucky enough to have a kind of pain that responds best to non-narcotic medications like Lyrica. And people scrutinize us for that elusive secondary gain we supposedly are all getting, even if they’ve never heard the term.
The reality is most people with severe chronic pain are telling the truth, even downplaying our pain. And it’s other people who seem to get secondary gain out if denying our experiences.
I want to live in a world where we don’t have to be afraid, to hide, to pretend it isn’t happening. Where people take us seriously. And where people help us if they can, even if it’s just emotional support, instead of doing that thing where if we don’t get better there’s something wrong with our character. I want this for all of us. That’s why I write about what the experiences are actually like, and try to be less afraid than I’ve been this whole time.
Now of course I’m completely worn out beyond… anything. I’d better post this and get some sleep before I see the doctor today. And I’m going to tell him exactly what things have been like lately. And maybe I’ll try and stop subtracting one to three numbers from my pain rating.
Bowsher's Criteria: The Diagnosis of Central Pain
Again, without my DPA reading this and knowing me really well I’d never have been diagnosed. This article too describes many reasons people with central pain have trouble describing it to doctors.
Our current guess, based on testing done of my mother, is that I have some kind of hereditary small fiber sensory neuropathy causing these symptoms. Everything I have ever heard about central pain applies to what I have. Except that since I got it so young, I grew up with no frame of reference until some of my epilepsy meds began to reduce the pain. It sounds like people who get it as adults have the same problem though because they rapidly forget what normal felt like.
I’m posting this stuff because if anyone else with chronic pain recognizes these descriptions, it can completely change which medications and other treatments you need to try to get rid of it.
For me, it always felt like someone had taken my skin, burned it, and then rubbed it with sandpaper, except that sometimes instead of burning hot it burned cold, like I imagine liquid nitrogen must feel. And it would spread around areas that were already in pain, so instead of heartburn, I’d get the feeling that someone was pressing a huge sheet of impossibly cold metal over my whole back.
I’d forgotten about this website before my DPA reminded me that when I made that long post about the aftermath of pain, there was no aftermath, I was still in pain but didn’t realize it. And these articles explain how someone can be at 8 on the pain scale and not know it’s pain, describing only effects on functioning, not sensations.
And even knowing that. I still do it all the time. It’s one of many reasons I have three friends who can often tell I’m in severe pain before I notice.
Including my DPA, who helped get me diagnosed and treated after reading these articles. If they sound like you or someone you know, read through the rest of the site, print stuff out, and talk to a doctor if you have one you can trust. You have to go through the Internet Archive as the site no longer exists, because it’s well worth it.
I know it sounds weird but reading this stuff somehow helped me remember I’m still part of humanity. It had gotten so bad I spent all day curled in a ball moaning, yet I didn’t know it was pain. The story of my life, I swear, even with much more normal forms of pain. (I have several conditions that cause pain, they overlap and cause my body to declare war on me.)
Intro to Central Pain: The Pain Beyond Pain
Clinicians are often impressed at what good historians normal patients can be regarding pain, but the opposite can be expected pertaining to pain which the patient knows is not normal pain, yet is severe. Central Pain, in its fully developed form, is persistent torture. Humans chronically tortured often become alienated and withdrawn. It is so severe that, lacking a vocabulary, they may be very poor historians and may be reluctant to reveal the inroads the pain has made into their humanity. Poor verbal skills may also be impacted by the thalamic shutdown in this disease, making it difficult to prioritize and stick to the appropriate comments, with the appropriate emphasis, in the flow of conversation. The vagueness and strangeness of the symptoms are also factors in poor descriptive performance.
If my DPA hadn’t read this article and gotten me to see a doctor, I’d probably still be curled up in a ball on the couch indefinitely, doing nothing, because that’s how bad it got before I sought treatment. They still don’t know if it’s some kind of sensory neuropathy or central pain, but either way it acts the same and to this day I forget to describe it as pain because it’s so different from any normal kind of pain. I notice I can’t do things, but I forget to look for pain and get confused. This is why I wrote the other day that I was exhausted in the aftermath of pain rather than that I was exhausted and incapable because my pain was still an 8. It was, again, my DPA that figured out why I couldn’t do anything that day.