After some comments by a physician who consults occasionally, we decided to have a round table discussion about the lack of structure experienced by those with central pain. You may find some of the opinions interesting.
My spinal cord injury was incomplete. I already had training in a tech field. I don’t know whether I could go back and get this kind of training now if I didn’t already have it. The burning would be a serious distraction for study. As it is now, I do what I have always done, but my memory is not as good. This frustrates me. I try to keep it hidden from those around me, but I seriously grow afraid when there is something I cannot remember, especially if it is short term memory kind of stuff. I think I suffer from pretty severe loss of working memory as I can handle only one thing at at time. Repeated questions from others generally make me forget what it was I was trying to do. I am not sure I should actually be working, but i have no choice. I definitely have a lack of structure in my life. I don’t know where I am headed, and although I crave a little distraction or entertainment, I usually collapse in a blue funk from the pain and just do nothing. I am still tired from the pain even if I do nothing. I sometimes could do a little more, but if I did my family would expect me to do it all the time, and when the pain has really exhausted me, I just need to try to hang on. My life is like a closet that everything that feels good has been taken out of and a bunch of junk has been shoved back in. My life is empty, but crowded, if that makes any sense.
It took years before I realized I couldn’t tell which of my pains was from nerve injury and which was mechanical. I have Harrington rods, and have a lot of pain from that, but my muscles and limbs ache in ways that I am sure are from central pain. When I go to the doctor’s office, everything is a big hurry. He treats my “PAIN” as if it were all one thing. I am still in pain. I don’t know if that means my rods should come out, or whether I would still have pain essentially as bad from the central pain. I wish he could help me know which of my pains are due to mechanical problems and which are central pains, but we never even come close to getting that deep into things. He is a nice guy and so he generally can tell I am in the dumps so he will tell me a joke or something to try to cheer me up, but what I really want him to do is help me work my way through these pains. I would consider myself an 8 or 9 out of 10 on the pain scale. My life is actually kind of a painful void. I hope the scientists hurry up and come out with something that works better.
I seem to get a different story from whatever pain clinic I go to, which makes me suspect none of them really know how to treat my central pain. One medication seems to make me as dopey and tired as another so I just go with whatever is least expensive. I have found little differences so sometimes I will spend extra. I have pains in my muscles which robs me of the ambition to get around, so I have a weight gain problem. I can’t complain. One of the girls at my pain clinic is C5 and she has this burning in her bladder and bloating in her stomach and she looks anorexic. I wish I could help her but as bad as I am, I think she is worse. She is full time in a wheelchair and wears this paper thin clothing because touch burns her so bad. I can at least wear clothing. Her family is exhausted too from trying to take care of her. I think she should rely more on a social worker. Those people have big work loads, but I keep telling her to keep asking for help, wearying her worker until something more is done to help relieve the family duties. I think this means I lack structure. I sure don’t plan much and tend to forget what I have planned. I am very poor at follow through.
I really don’t know how to talk about my central pain. The worst question I get is “How are you?”. When this is asked by my mother or someone I have already talked to about central pain, I realize I can’t communicate with anyone about it. I think being part of the crowd, part of society helps you gain structure. When you are isolated, you can’t really invent a pain civilization from scratch, so I think our lives are pretty much disoriented. We don’t notice because if we deal with the pain, if feels like we have done something, but there is also the lack of satisfaction and sense of order that happens in the real world. I was born bright, so I know I could work circles around some of the people who look down on me. They don’t realize how depressed I am from the pain. I don’t think about structure, or even happiness really. It is like I am stuck in a cave and I am just waiting for life to hurry up and run its course. in the meantime, I suffer. I think lack of structure is a given for severe pain, but this is the first time I have really thought about it.
Lack of structure? I need to be reminded to do anything and then when the time comes I hate doing it, because my meds make me so tired. Also, my muscles hurt so I don’t like to do anything unless there is a payoff. I love children and I guess my sister’s kids are the highpoint of my life. I need some adult conversation too, but no one really wants to hear about pain, and that is all that has my interest. Maybe lack of structure should be called lack of life.
You have to be well to have structure. When you are really sick, everything is structured around dealing with that illness. At my hospital, the oncology clinic is right next to the pain clinic, so the waiting areas are kind of combined. I am amazed to see some of the cancer patients who are working fulltime. I could never do that. I find myself wish I could have cancer instead, because they will either die and get it over with, or they only suffer when they are on courses of chemo. I talk to them about what they are going through. They have no idea what I am going through although I have told them I have central pain. They just automatically think cancer is worse than anything and so this makes for a disconnect between us that makes me feel isolated from them and from the whole human race. I don’t think life is meant to be structured just around yourself, so I probably have almost no structure at all, although I am overwhelmed with doing things in the face of my pain. After my SCI I miss sex, I miss a real relationship, and I miss whoever it was that I used to be. When you aren’t yourself, what good does any structure do you. It isn’t real structure if it doesn’t answer who you are, or used to be.
Life absolutely cannot be structured around burning pain. What kind of structure would that be? The structure of torture? Torture is insane, so there is no structure. I can still feel a little in touch with God. I hope he makes me well either in this life or the next so I won’t have this bad attitude where I kind of feel abandoned by him, although I know God doesn’t really abandon you. I certainly don’t worry about what other people worry about. It makes me angry to watch reality TV shows and see people who have the luxury to worry about trivial things. That is when I realize how much my life has changed. It really sucks, and since everyone uses that word, I need a new one, which is a thousand times worse. I hate wasting my money on drugs for my pain, and I hate being more animal than human. Do animals have structure? I think they have instincts. That is where I am now, more or less running on instincts that originate from the pain.
I get mad at the public, especially those at church, who seem to walk around so holy and have never once given me any moral support. There is this one guy who is nice to me, but he doesn’t want to talk about pain, No one does. I paid $120 per hour (45 minutes actually) for eight visits with this psychologist hoping to find some mental way to cope with the burning and everything else. He smiled, seemed sympathetic, but then it hit me in the face that he didn’t get it when he said, “I know you THINK you have pain, but emotional pain is so much worse, so realize you are lucky”. Since all I had talked about was the emotional pain of having physical pain, I have never wasted any more money on psychologists or therapists. They live in a different dimension, where there is some structure. I am also angry at Dr. Phil because he had this pain person on once, back pain or something, and he didn’t even acknowledge that there is something like central pain that is NOT psychological. If Dr. Phil could have central pain like me, it would be interesting watching him try to address it psychologically and then eventually collapse, just like me. I live, if you can call it that, in some hell on earth. Since my idea of hell includes lots of chaos, I don’t even think about structure. I think about when I can get my clothes off to ease the burning, when the time of year will make for moderate temperatures, and slowly withdraw from those around me until I am like a little shriveled nut in a glass bottle, in the back of the cabinet. The only structure that nut has is the bottle it is sitting in.
There really isn’t any structure to pain, especially burning dysesthesia. There isn’t structure if you have your hand in a blowtorch, or if you are getting a vaccination, or someone is setting a broken bone. There is only pain. Pain is anti-structure. That is part of what makes it stink. Structure implies holding things together and I lost myself a long time ago. I don’t even have the language to talk about my central pain. I do appreciate some of the articles at painonline, because they express a little of what I have felt but have never been able to say. Painonline provides a little structure in my life, but it is only a tiny substitute for the real thing.
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