David Berg
10-20-2005, 12:11 PM
Not a bad article. Originally from MayoClinic.com
http://articles.health.msn.com/id/100096646?GT1=7188
"When chronic pain intrudes on your life, you may feel overwhelmed by intense emotions. Panic, grief and anger are just a sampling. Like the pain that spawns them, these emotions can linger and transform you into a different person."
dejerine
10-23-2005, 07:52 AM
Platitude City
Dear David,
This article has many good points and I enjoyed reading it. It is one of the best I have read. Thank you for citing it. I am getting more and more positive every day in every way, as this post will be only too compelling of a witness. I know you are ready for some humor, so here goes some more gallows humor on CP. Besides, any article that tells us we "MAY miss happiness" deserves to be skewered.
CP is the bigtime. The love and sweetness article misses the mark on severe central pain because it fails to comprehend the pervasiveness and severity. Once again, the psychologists have waxed presumptious about the reach of their knowledge. You can't just be an official expert, you have to be an expert about something specific, not just a "soothsayer". This article on pain seems aimed at someone with a bad disc (eg. "I would like to continue the round of golf with you for the full 18 holes, but I'll bow out after 9"). It isn't exactly NEW AGE beautiful thought type of writing, but it fails to acknowledge the fundamental difference between ordinary and neuropathic pain, or as I term it, sane and insane pain. The article begins in standard psychologic and Oprah/Dr. Phil form by saying the first and most important step is to ACKNOWLEDGE that you have pain.
Having done this step, acknowledging we are in pain (are they serious?) which is just so remarkably easy in Central Pain, sort of like admitting to yourself when your parachute doesn't open that you are falling downward (I'm not falling, my vision is just getting much much better and I can see the ground progressively more clearly because of that--the wind is blowing into my face only because of global warming causing uprising air shifts, as for me I am remaining stationary, here in the air, gravity having disappeared from the universe), yes, acknowledgement is the BIG step, supposedly. What a help! (How about "acknowledging" that you are giving advice on something about which you have no idea of what it feels like, have never been in a lab where CP rats try to chew off their limbs, and acknowledging that it is utterly presumptious to give advice from a position of ignorance). Ask a minister what it is like to be dead. Chances are half of them will launch into some big expert explanation--only problem, they have no idea.
Then we are to "NOT PERSONALIZE" ie. we should combat feelings where we imagine that people don't choose to be around us, etc. These opinion pieces are sort of like dishonest advice to people who are really ugly. "Don't personalize. Don't think that looks are important. Talk to your many friends. Focus on the positive." What such people should do is lose weight, exercise, dress attractively, visit a good dentist, and see a plastic surgeon. This is all very expensive, but THAT will do what talking about it will not. It is time to admit that nothing much is of any good for CP except PAIN RELIEF which is going to take a LOT of research money to accomplish.
The basic problem is that people familiar with ordinary pain continue to be misinformed or deluded that people in central pain have many options. The article has internal inconsistencies. We are first to acknowledge that our pain is severe and that we will never be the same person, and then we are to focus on the many options available to us. The real fact is that the number of options is remarkably small.
And so , from my usual position of irony, I thought I would write a takeoff on the article and apply it to high cervical spinal cord injury, so the problem of the article appears, ie you cannot talk about the inevitable as if it were changeable by mere thought, the "power of mind over matter" (what is that exactly?).
1. First acknowledge that you are paralyzed. Your arms and legs are not just sitting there being stubborn, they are actually paralyzed. You cannot move them. Their remaining in one place means they don't have any nerve supply. Don't even think about trying to move them. Acknowledgement is the first and most important step.
2. You MAY miss sex, happiness, the privacy of evacuating your bowels and bladder predictably, loss of relationships, your job, driving, fighting in the mosh pits at rock concerts, not being stared at, and going for walks. These are serious losses, you might as well face that and quit telling yourself it doesn't matter.
3. Many people who cannot move respond with frustration. They MAY not like having to ask someone to bring them a glass of water and hold their straw. In fact, they MAY regret not being able to afford anyone to do this assistance. They MAY not like having a stranger intrude into every aspect of their lives and paying them to do it. Some of those male assistants can be pretty bossy when it comes to which TV channel will be chosen, and what food had better be in the fridge, and whether they should stay in the bathroom for long periods toking down a couple dozen doobies. Letting yourself feel frustrated MAY make the problem worse. You can't afford negative emotions, although if you overcome denial, then there is a one hundred percent chance you will have lots of them, since you will still be human and want to have control of the remote once in a while.
4. You may come to terms with your paralysis more easily if you admit that your loss is serious, don't trivialize high cervical injury, Discuss your serious problems like bowel incontinence and autonomic dysfunction with others, who will line up for such fascinating topics. It helps to get these things off your chest with the MANY who wish to hear about your problems on that gravelly sidewalk ramp where your wheels spun and about the smells you must take care to avoid. Talk about insensate sex with the papaverine injections and how the catheter gets in the way. Mealtime and at church are especially good places to bring these topics up.
5. Give yourself TIME for emotional healing. Don't heal up all at once. It is unhealthy to heal quickly. Talking with a board certified doctor at one hundred dollars per hour, or a psychologist at two hundred per hour or a layperson on the psychic hotline at six hundred dollars per hour can help. And you actually really have plenty of time, LOTS and LOTS of unending TIME, like the rest of your life. Hopefully just as you crump off, the emotional healing will arrive simultaneously.
6. MANAGE your anger. It is unhealthy to bottle up your anger and equally unhealthy to let it out. Emotional outbursts are no good. Having lots of anger can make you tense, which then makes it hard to relax. (Wow, these psychologists are good!) Not only that, but anger can make you depressed in the long run, making you just sit there, not doing anything. NOTE: IF you get to this point, then forget our advice on tenseness and not being able to relax, instead find ways to get your muscles to respond, also your brain.
7. "Automatic feelings" about being paralyzed can be "positive or negative". You live in a society which rewards (and expects) positive feelings about paralysis, so of course, those are the ones you should feel. This is your chance to write a book. Keep it inspirational. If you have trouble identifying things about paralysis that should make you feel positive, then "brainstorm" with friends. Try role playing to identify the aspects of being paralyzed that trigger a negative thought, and practice having positive feelings about them. For example, you could think about the parking places for handicapped (which are always filled with people who are merely old), or about special bathroom stalls for the handicapped (which are usually place the toilet seat covers high on the wall where management can reach them, and have toilet paper dispensers which require a PhD in mechanical engineering to make them work).
8. Avoid emotionalizing. This is where if you FEEL paralyzed, then you will be paralyzed. We realize this point conflicts with our point on the importance of acknowledging you are paralyzed, but you must reach the higher plane of consciousness, where perceptions change everything and then just have positive emotions.
9. Don't be a perfectionist. Face your limitations. Don't say to yourself, "I can perform well at a stressful job and still keep a perfect house." BEING that perfectionist MAY come at too high a cost in frustration since you cannot move, and are also worried about not being able to get up and down the curb.
10. Learn to assert yourself, unless it is by criticizing the inaneness of the article, of course. Don't be passive, except in agreeing with whatever any psychologist says. Passive behavior and paralysis can be dangerous if you always give into the demands of others. If they demand you run in the Kona Iron Man Triathlon and you do it, even though you are paralyzed, then you risk loss of self esteem in case your performance does not match their expectations.
If one assumes that pain is flexible, malleable, and endlessly reformable, through positive thinking, self esteem, acknowledgement it is there, etc. they have merely fed into the public's misapprehension of what Central Pain is all about. Its severity makes it dissimilar to ordinary pain, which is bad enough. Central pain is like a lowered plane of consciousness where everything goes wrong and everything sinks down, and there you are. ADMIT I am in pain. I want someone else to admit I am in pain. Fortunately, the work of the PhD's leaves no other reasonable conclusion than that people whose nervous system is packed with pain exciters, have, shock the world, pain.
My cord and dorsal root ganglia are packed full of pain inducing kinases and cytokines. The ion channels and gene expression in my pain neurons is completely out of whack and fixed on full steam ahead. The power of positive thinking is actually a killer, because humans want to think their pain will end. As for self esteem, I would be boosting the devil who has my body in its clutches, if I thought this agonized lump of protoplasm was something special. I think it would help to analyze the vapidity of some of these motivational pieces if we changed things to "BEING ON FIRE". First you must acknowledge that you are on fire, etc. etc. etc.
Grafting the old saws about emotional coping strategies in other conditions is silly in central pain. It is the MOST SEVERE PAIN STATE KNOWN TO MAN", in its severe form. Thank goodness most with CP don't have the really severe variety that has found their urethra, the dura around their brain, their gut, their muscles, and all their skin. But some do have this kind of Central Pain and they need intense support, skilled psychiatric help, and a lot of prayers to feel life is worth living. How could it be any other way. It is SEVERE pain we are talking about.
We wouldn't hand up a copy of Dr. Phil's book to someone who is being burned at the stake. Paper burns so it would just make things worse. I think some of the pain advice is benighted and as always, some people are a little short of a capsaicin party, where they get to feel some burning and get the message. When I did the capsaicin thing, I found the burn to be minor, about twenty five percent of central pain burning, if I got in warm water to bring it out. Of course, it did not include the lightning pains, the visceral pains, the muscle pains, and the many other wonderful, but seldom acknowledged aspects of severe CP, most of which would bring an elephant to its knees. As long as we allow pain therapists to lump severe CP in with chronic low back pain type counseling, we are wimping out. We need to speak openly and candidly.
Some of the hardest to handle are the mild CP cases, who should know better but say, "Excuse me, I have central pain, and I am doing well". I am happy for them but even they lack the imagination to realize that central pain can get unbelievably worse. Only when we start looking at the signals in the brain, the amount of pain exciters, and the amount of altered gene expression will we be able to quantify central pain. Every time someone gives me some inspirational story about how they have CP but have gone on to redecorate NYC, run for president, etc. I cannot escape the suspicion they don't have any central pain at all.
The central pain I know is another state of existence where the rules are changed, not just the presence of pain. How does one philosophize about what they have never experienced. They don't. That is why we keep getting these opinion pieces from psychologists about how to handle pain which apply to PAIN as THEY have experiened it. That is what they think pain is. It IS what pain is, but it is is just not what CENTRAL PAIN is. Pain and Central Pain involve homonyms. Words are same, experience is different. They all need a session with capsaicin, that evoker of the TRPV-1 receptor, and the philosophizing could then evolve realistically. Most of it would be swear words and the rest would be tears. At the end, they would stop talking and start begging money for the NIH to do their thing.
Following Dr. Young's advice to lower our expectations for life is the best philosophy I know. If you wonder how low you can go, you will find out. CP is one thing that is like nothing else. Just as the vocabulary of human experience does not include central pain sensations, the vocabulary of emotional consequences of pain is inadequate advice for severe central pain.
A philosophy for central pain must be crafted from within, not come from grafting ideas about some other state onto it. It is not an ordinary stress. We who have it are not ordinary humans. You just as well give the AA 12 step book to a schizophrenic as to hand out pain advice about low backs to someone with central pain. The pain system has gone insane. It fires off like crazy when there is not even any pain stimulus. It is chemical fire in the neurons and only application of some physical remedy is going to stop it. Neither depression, nor anything else can find its way into severe pain. The flames consume everything. It is the flames which must be stopped and it will take research money to do it. Over and over again, we must ask for a PAIN remedy, not some philosophy of life. If I am alive, my philosophy is working, whatever it is.
john smith
10-23-2005, 09:33 AM
dejerine;
A stunning post. You,
"Who sings the song of the way things are." Lucretius 55 BC
Thank you,
John
dejerine
10-23-2005, 11:07 AM
Thanks John
Your comment makes this night where the pain kept me from ever sleeping, so I sat here and spouted off, worth the effort and the pain my neck will feel from typing. I never claim to be right, I just claim to be in pain and let the stuff run out. My gut writes it. I am just as concerned about everyone here as myself. We are all in trouble.
carbar
10-23-2005, 11:34 AM
Thank you djerine for a very insightful and yes humorous post.
The article was itself laughable but for all the wrong reasons. When exactly was this generation of patronizing psychobabblers born? It seems we have them at one extreme and at the other the oldfashioned medics who said nothing but just wrote endless prescriptions and sent you on your way. In modern parlance pain is not "sexy" so I suppose someone somewhere thought to wrap it up in all these layers of bogus interpretations.
LaoziSailor
10-23-2005, 12:10 PM
dejerine,
FWIW, I concur with John's "A stunning post" statement. Your post impressed me as well.
I went and dug a little deeper because I wanted to find out who had written the article and found the Mayo Clinic article Chronic pain: Managing your emotions (http://www.mayoclinic.com/invoke.cfm?objectid=311DFE7E-72DD-4583-868A51CD5DEF5370). It is dated April 07, 2004 and "written" by Mayo Clinic staff (http://www.mayoclinic.com/invoke.cfm?objectid=3EA91D2C-455B-41C1-9FA9FAB29C44CA04), ...not very accessible :( -- can't write back (...easily.)
Whenever I see things on the internet I try to determine not only the validity of content and source. Further, I try to determine the target audience.
What I found is that MSN has pidgeon-holed(sp?) this in their "Arthritis" section and within that context, the article would read completely different.
Mayo Clinic does somewhat better by classifying it under "Pain Management Center" (http://www.mayoclinic.com/findinformation/conditioncenters/centers.cfm?objectid=C358497D-88D1-4AB3-B1503C4603EC981F).
They have some other articles that go beyond the one on the MSN site (...not criticizing David's post) and are also (IMO) lacking. The target audience will be different than MSN's and would yet once more "read differently."
I think we should somehow get your post to the Mayo Clinic.
Cheers!
Although as the article suggests, ones mental attitude can help a great deal with pain, unfortunately where the article misses that boat is that with CP, certainly my case, the pain continues to increase in severity. It is difficult to deal with a condition that continues to get worse, as each day brings a new level of hopelessness. Although I have a great deal of respect for the Mayo
Clinic, I attended their pain clinic and found that they are pretty clueless regarding CP. As a matter of fact I found that the neurologists I saw during my examinations did not even recognize the condition.
SunnyCJ
10-25-2005, 12:02 AM
Dejerine,
Your post was amazing and TOTALLY how I feel! You put it so well what us with central pain go through. This was the perfect day for me to read this post from you because I am feeling so depressed after just coming back from the chronic pain doctor. My pain has increased so badly that I cannot stand it and am having such a hard time coping and I have been dealing with this for 12 years. You made an excellent point, that we need more research being done on this horrific pain.
CJ
C5, incomplete, 12 years post
Chaz19
10-25-2005, 02:41 PM
dejerine,
I could not agree more! you summed up a lot of feelings and thoughts that consistently revolve around and around in my brain---your article made me feel little more sane. Thank you for your insight-