so i'm back again in so much pain

[metronycguy]

[QUOTE=
As to the docs, they simply have not read the literature, at least not the foundational literature. From Weir Mitchell to Dejerine and Roussy, to the modern writers on Central pain textwise, such as the Textbook of Pain, John Bonica, Jorgen Boivie, and the foundational studies, ALL AGREE that opiates do NOT help. The National Institutes of Health concur on this
.[/QUOTE]
actually i am not sure who wrote the above since i noticied a quote within what i was trying to quote. i find that opiates doi work but dont really sedate me, my 24/7 is methadone , which has helped with pain immensely due to the long half life. i do hate it, since my lif went on a downhill since i started it a couple of years back my bt pain is fentora, which i am very lucky to be able to get. i was worried the last couple noths that i would have to raise my dose of fentora from 400 to 600mcg for bt. i may still have to if thr raising of the methadone doesnt work well. with this tirf/rems stuff i will follow the feds directions to a t. i always told my doctors is i had to take more than what was allowed, but now with the feds invilved i will not place my self in jeopordy, een though i have manged for a couple years. the fentors works and irt works fast , but not fast enough, your not suppose to suck on it , but they flavor it like a sweettart. assholes. you get a much better effect if you let it dissolve in your buccal area between the upper molar and cheek, this way it does not go to thee stomach, which makes the absorbition less and longer my foot will be going around in circles, myu reaction when it is being painafied. 30 minutes , usualluy after fentors the spinning will be a lot slower and i may bee able to think again, sometimes after a hjour the pain will be gone but it is suppose to act within minutes.
However i hav e bone on bone on my lumbsar disk, with a lot of scar tissur fron 2 surgeries, with no hardware, plus stenosis,,. so in my case it may be more like after surgery,since the nerves are being rubbed raw ,like a tooth nerve qnd i need a root canal called a drez procedure, bur since i walk that is out of the question.
i am tired of doctors acting why my pain is higher, they dont listen,
i have bone on bone, i brought you my last rehab doc report plus the mri's
look at them. They want me to exercise more, i like to, but it= more pain,laundry=more pain just about any physical actity = more pain.
Sex, i havent had any i a while, the last time i did pain was off tyhre wall for 3 or 4 days, and it was worth it.\
but we are all different, we just need to know what causes it. i am also upping my neurotin to 600 for afternoon and night and 300 in am as a prevetitive measure.
And like all of you like sucks, but i know if i go on the slow acting opana type bt meds, i will be lying deceased in my shit. And i hate when that happens

[dejerine]

HI metro

Well, the initial surveys did not sort out the cauda equinas and now that you mention it, I think maybe Arndog also gets some relief. Maybe something there about which I should be enlightened. Hip Crip also gets some relief, but cord tumor removal patients are in a unique group, so I am very cautious about making any definite statements. However, the boys at NIH (NIDCR) do NOT think classic post SCI central pain is relieved by opiates so there must be some refinement we are missing on this topic. One author who maintains opiates help believes this is true only at VERY HIGH levels, and that tolerance often eliminates anyone on this regimen from effective pain relief (so called disinhibition comes in here). Maybe "sedation" is not a good word either. Oxycontin and hydromorphone are supposed to be less depressant than some other opiates. I think you are the first I have heard to say methadone is not, so while I do not question it, I do wonder how to process it. Maybe you are comparing it to fentanyl, which is quite sedating.

In Confessions of an English Opium Eater by DeQuincy, the writer claimed laudanum "drugged him, but also enabled heightened thinking on certain points", yet in another place, he refers to the somnolence, so go figure. Thanks for posting.

[cass]

lord, i wish. pink floyd. comfortably numb.

http://www.youtube.com/watch?v=km8QHSxDc8c

[faceplant]

Dejerine~ Thanks for your very long post. I do agree that MD's just don't understand but frankly most MD's just can't and don't simply take the time to try to understand. I have seen patients try to describe pain to a physician and watch the physician stare at the computer and nod as though they are listening but they are not.......I do have a great MD who told me I "just have run out of ideas" and is sending me to a pain clinic which is great because I think they probably have more experience with this type of pain, at least I hope that they do. I agree with you that patients must own part of the patient/physician relationship and be willing to work with their physician and that opiates may not always be the answer in fact I'd rather not have them unless needed for episodes of SEVERE breakthrough pain, however the physician must also be willing to listen to the patient and be willing to refer out to a pain clinic or other expert and not just throw up their hands and give up on a patient and call them a drug seeker. It's a horrible thing to be in pain every second of every hour of every day......to never have a break......to wake up in pain.....to fall asleep in pain......it wears you down physically, mentally, and spiritually (it just takes away your sparkle as my Mom would say) I think to treat ones pain you have to go after it with different things... meds (including narcs if necessary), relaxation techniques, exercise, diet, Tens, ice, herbals, heat......and whatever they can think of. I hope someone does devote some research to the subject but somehow I doubt that will happen anytime soon.....it just doesn't have the high profile of some of the other diseases.... i wish it did. I just hope that everyone living with this pain can find something that works for them and can get some relief!!!

[LindaT]

Are there any articles or pamphlets that explain central pain for family members to read? Something simple.
My mom and sister think my husband is "addicted" because he takes 2 Ativan a day to calm the CP and sometimes up to 3 Percocet for neck pain.
He has been going to PT for his neck which is improving and we are working on repositioning/seating.
They mean well and keep buying him neck pillows, spray on pain med (ostrich oil!) warming blankets etc.
I want to add here that the Ativan is the only thing that really helps when the pain gets "wound up." Lyrica 150 3X a day has been a huge help.
The best I can explain to people is that it is like phantom pain the amputees get-is that totally wrong?
It is such a helpless feeling when your loved one is in pain.

[wheeliecoach]

Originally Posted by sjean423

screw walking, just get rid of the pain in my mind.

Agreed!

[dejerine]

Hi Linda

Let me first say how impressed I am that you care that much about your husband's injury. Most of us who have been through rehab know how rare a sympathetic long term concern is. People tire of the problems of others because they have so many of their own. I think Arndog called this "empathy burnout".

You are fortunate that Lyrica is working that well. It is possible a pain clinic will have some other anticonvulsant which works better but don't count on it.

My experience is that people, including family members, who do not have central pain have a very low tolerance for explanation, and as soon as you mention the real causes such as neuroinflammation they categorize it at the same level as pain many have experienced. On the other hand, if you actually succeed in persuading people that it is really really severe, it sort of frightens them, or makes them think there may be some element of craziness in it, which they are not prepared to think about.

So no, since medicine has only fragmentary articles on central pain, no one has simplified the mishmash in texts to a level the ordinary person can understand it.

David's site, painonline.org has some good articles, but they are not really at layman's level.

You might try the following:
1) fully elaborated central pain is the worst pain state known to man
2) it does not have any visible signs
3) when any part of the body is injured, a little inflamation is induced by the immune system to prevent a person from using that part of the body--this inflammation results in pain.
4) Ongoing inflammation results in fatty acids building up in the injured area. Cord pain probably quadruples the amount of acid one would see in a normal injury. The acid causes continual pain firing.
4) When the cord is injured, it attempts to repair itself, and the body also sets up some inflammation but the nerves usually fail to reconnect. This "attempt to repair mode" results in a constant inflammation of that area of the cord, with acidification, which then spreads the process to each connection, or synapse, like dominoes falling over, right on up to the brain.
5) Central Pain does not respond to ordinary pain meds because ordinary pain meds work at cord level, while central pain is being generated from the brain itself.


Central Pain is neuroinflammation, and inflammation is acidification. In Pat Wall's database, the most common verbal descriptor of dysesthetic burning was "like acid just under my skin".

The above will not work, but it may give you some clues on what your relatives might listen to. You will not likely get beyond point 1, but you can try. Your listener has had back pain--surely central pain cannot be worse than that.

[LindaT]

Thanks dejerine, My husband is a tough cookie, so when I see him in agony or tears I know it is for real. And even knowing that, I will never truly know what it feels like.
This forum is what made me understand it as well as I can and when I read him posts he knows he is not "crazy."
He first tried gabapentin which did nothing.

[t8burst]

The above will not work, but it may give you some clues on what your relatives might listen to. You will not likely get beyond point 1, but you can try. Your listener has had back pain--surely central pain cannot be worse than that.

People don't understand, I have ceased to talk about it. I have to say Linda is one of my personal heros, for the way she care for Dave. Dave is a lucky guy, if I had his level of injury I would probably be in a nursing home.

I have yet to see a good description of neuro pain, to try to explain it I have told people they have had neuro pain of some form, bump your funny bone, lay the wrong way and have your arm go to sleep. Take the pin pricks of the hand waking up mix in wacking your funny bone really hard and then add in a burning feeling. The have it never, ever stop. Even that doesn't really do it justice.

[David Berg]

Originally Posted by LindaT

Are there any articles or pamphlets that explain central pain for family members to read? Something simple.
My mom and sister think my husband is "addicted" because he takes 2 Ativan a day to calm the CP and sometimes up to 3 Percocet for neck pain.
He has been going to PT for his neck which is improving and we are working on repositioning/seating.
They mean well and keep buying him neck pillows, spray on pain med (ostrich oil!) warming blankets etc.
I want to add here that the Ativan is the only thing that really helps when the pain gets "wound up." Lyrica 150 3X a day has been a huge help.
The best I can explain to people is that it is like phantom pain the amputees get-is that totally wrong?
It is such a helpless feeling when your loved one is in pain.

Linda, like dejerine said I do have a couple of things on my website that might be useful.

This page has a little info for family members near the end of the page.
http://painonline.org/meaning.htm

And this one has some descriptions of central pain that I received in various emails.
http://painonline.org/description.htm