View Full Version : Central pain - hell on earth
This may belong in Life, so feel free to move it.
21 years ago today, I heard the fateful words, "You're paralyzed, and it's hopeless." A C-5 quadriplegic. Natually, I was devastated. Little did I know that I soon would be wishing that was true.
I always thought "paralyzed" meant you can't move or feel. A month after the injury, I started feeling - pain. All over my body, where I wasn't supposed to feel anything. The doctors said I wasn't having pain. My brain said otherwise, and has said so more loudly ever since.
The pains kept intensifying, and further limiting what I could do. I once could push a manual chair up a hill (with hill climbers) - now, I can barely drive an electric chair. I could exercise, and take tough PT - now, I can't exercise. I could go places - every year, fewer and fewer places, and now I'm homebound. I could type long letters - now, even this is a chore. My central pain is no different than a progressive disabling condition, only I started out disabled and get more so.
How about just a cure to allow me to be a "regular" quad, and do what other folks my level do? Is that really too much to ask? <sigh>
Karen'sMom
06-12-2002, 12:36 AM
Alan,
I am so sorry that you are in so much pain. It truly must be hell for you. Isn't there anything that the Doctors can do to help you with it? Do they even know exactly why you are in so much pain? Surely there must be something or someone that could help you. What about alternative treatments? I don't even know what they might be, but I really hope that you find help. Demand it!
Good Luck with managing your pain. I sincerely hope you get some relief for it.
Darlene
snoskrz
06-12-2002, 01:02 PM
i hear your pain loud and clear...i too am NOT a regualar quad. i thought i was totally alone until i found this site. i know i'm not alone and at least it makes me feel better to know that central pain meds are will be here to help us soon. before nuerontin i was a total mess. i'm holding on to hope. i hope you will too.
teena
06-12-2002, 04:19 PM
The sentence that jumped off the page at me was that you are homebound...I just want to tell you to keep that mind of yours active...don't let it get you totally down, ok? I wish you were a normal quad too...but moreover I wish you didn't have SCI...I wish NOBODY had SCI...
But...unfortunately, I am not able to change SCI...but I can let you know that you need to keep hope in your heart!!!
Hang on, Alan...it's a rough ride, but just wait till you have some better days!
Take care...
Teena
whiterabbit11
06-12-2002, 04:22 PM
Alan,
I'm still here at work wasting the last hr. The County getas plenty out of me, it just quieted down so decided to get on-line for awhile. I sure wish Ihad an answer. I frequent the pain site looking for answers to my pain troubles which are probably nothing compared to you. I've got one totally shot shoulder that makes work hell somedays, real severe scoliosis from removal of the upper 6" of leg bone from osteomyelitis. It was horrible at the time. somedays it's hard to pick up a cup nd I often hide in the bathroom to keep it from showing, but usually make it through court on adrenalin. Possibly, I had something close to yours for a little while. I don't know what happened, but woke up in intensive care. I was in the hospital for spasms that tore me to pieces, temp would go to 104 and BP 240/150. When I woke up this particular time i screamed when anyone touched me even slightly. It went on for about an hour, nothing I'd ever felt before. When it quit thwe top of my head was numbfor 3-4 months. My Dr. had no idea what it was.God I hope yours isn't that way all the time. the next worse is the occaisional pressure headache from A.D. -usually a kinked off cath. The head just pounds unbearably, but they go away.Have they tried the oxy-C. I have a quad friend who I e-mail now and thenwho describes like you. He says the OXY-C helps a little. How about the Fentanyl patch (commercial name duragesic) i can't get by without them. If you want I'll give you Pauls e-mail-as I said his sounds like yours and he's got a shitload of neurologists trying to help him from K.C. I'm heade out pretty quick. I'm on call this week and you never know when the cops need a search warrant -usually about 2:30 a.m. take care. W
I am only a T4 but can relate to how you feel, alan. I have tried to find some relief over the past 7 years too without success. I am currently on 1200 mg/day of neurontin and 400 mg/day of Ultram and have found only limited relief. My doctors have tried the low doses of antidepressants but they only made me sleep most of the day away. If you have not given the neurontin or antidepressants a try I would suggest doing so because they do help if you can tolerate the side effects. When I tried ramping up on the neurontin my wife found me asleep on my commode chair and told the doctor to lower the dosage so I could function.
There has been talk here and on other websites about how smoking pot has helped some people tolerate central pain. Not knowing your take on this whole medical marijuana thing (I support it) I offer this as only a suggestion. My circumstances prohibit it for me. Besides my wife working for the courts, we have a very aggressive law enforcement official here (former DEA and now the "toughest sherrif in America"). If it were not for him and his tent jails I think I would try it myself law or no.
I hope you find something to help, guy. It is hell to live like this.
"And so it begins."
I've been through just about all the drugs, so far, and the spinal cord stimulator. Neurontin gave me hallucinations, as did some of the other anti-seizure meds tried in its place. The fentanyl patch made me sick as a dog. On Oxycontin, I barely got any sleep in over four months. Marijuana (I support medical pot, as well as legalizing it, period, but that's a discussion for a political board) actually made things worse, as the heightened perceptions made the pains even more intense. The tricyclic antidepressants mess up my bladder. And so on. Naturally, any med that causes constipation is a problem, because it only adds to the SCI bowel struggles. That's the problem with methadone now.
What causes central pain? Why doesn't it stay stable over time? Those are questions for SuperDavid, our moderator. :-) He's the resident expert.
I appreciate all the support. None of us deserves pain on top of SCI, which is bad enough all by itself. There are a lot of lists I'd like to be number one one, but "you have the worst case of post-spinal cord injury pain I've ever seen" definitely wasn't one of them.
TD, have you tried Marinol? It's the prescription derivative of marijuana, and has helped some people's pain. Maybe you'd be one of them.
Christopher Paddon
06-13-2002, 12:22 AM
Where do you live, Alan? Is it your own home or with your parents?
I am deeply depressed at the moment and am convinced I am going to spend the remainder of my miserable life in rest homes and institutions -
i would rather be dead
How many SCI do live in nursing homes? More than we think I reckon
Sue Pendleton
06-13-2002, 01:35 PM
Hi Chris. Good to see you back. Hope the move wasn't too much a hassle. Here in the States I believe it's about 6 or 7 percent of people discharged from rehab go to nursing homes. Most are either older and vent dependent or young men in poor urban areas. Many people manage their own home with some home assistance from outside aides or family and friends. I have a friend that is a C6, owns her own home, works fulltime and has the teen on hormones from hell to deal with these days. :-) Sure, she has her bad days but she found not working made her very depressed. But like most her biggest problem is finding and keeping personal care attendents.
I notice you're a T7. With a properly modified home would you be able to live alone with occassional help for large home cleaning jobs and the like? Many people do and add health aides as they get older to help due to shoulder burn out and the like. Nursing homes are a necessity at times. I have checked out the local ones here in case my husband becomes ill. Many have short term respite services that can work well as you manage moves from one home to another. I don't think I'd care for one fulltime either! Yuck.
Sorry to hear about your anniversary Alan. That truly sucks with the pain stuff too. Hope the methadone helps this time. I think the one nurse was on to something suggesting more frequent bowel programs to control the cement factor.. Hang in there!
Originally posted by alan:
What causes central pain? Why doesn't it stay stable over time? Those are questions for SuperDavid, our moderator. :-) He's the resident expert.
Alan, Try going here. search for Central Pain.
http://www.pain.com/library/library.cfm
Originally posted by alan:
TD, have you tried Marinol? It's the prescription derivative of marijuana, and has helped some people's pain. Maybe you'd be one of them.
I have not been able to find a MD who will prescribe it, I doubt my insurance company will approve it (I get it through my wife's work...the county! http://sci.rutgers.edu/forum/images/smilies/eek.gif http://sci.rutgers.edu/forum/images/smilies/rolleyes.gif Can you say Sheriff Joe Arpaio http://sci.rutgers.edu/forum/images/smilies/tongue.gif ), I hear it has lots of side effects, and according to our guvmint research it is not as effective as smoking the plant. I already smoke a pipe (I occasionally inhale...a throw back from when I smoked cigarettes) so smoking would not be a problem.
"And so it begins."
I live at home, with my mother. I have no idea what will happen down the road when she's no longer here. If the pains still haven't been treated, allowing me some kind of life, maybe I'll finally find a way to off myself at that point, and have the nerve to do it. So far, I'm too chicken, and don't have a method (useless hands get in the way of that, too), and Mom likes having me around.
Christopher Paddon
06-13-2002, 07:05 PM
I'm much the same Alan though T7 and am so guilty that I don'yt have the personality to be independent - i'm sure my sister can't take meon when mumgoes and it's really chhery to know that paras arms eventually fall apart along with everything else
- have you read anything by Whiterabbite? - unbelivable & so are the rest of you
as for me the future 'sucks' - I had it good for the first 20 years with mum and dad's support and employment and reasonable health - it's all not so slowly disappearing
whiterabbit11
06-13-2002, 09:24 PM
I wish there was something I could help with. I just answered Alan's post about the pump. I've read some stuff on the self administered morphine pump device. Didn't I read one of your posts (Alan's) which said morphine in the I.V. helped?By now you know I'm a big Demerol fan. I'm going to try some acupuncture-I'm sure you've thought of all that including meditation. There was a long program on Marijuana on NPR tonight. It's now 15 times stronger than the stuff I was raised on in the 60's and a quad friend of mine from K.C. uses it along with oxy-c. I'm afraid he's going to overdo it sometime with a bad mix. My Dr. once had me taking clonopin, neurontin, darvocet, vioxx, fentanyl patch and xanax in various doses and intervals. I find that it helps if I can once get on top of the pain a bit and relax my nerves with xanax 100mg and meditate-just try to empty the brain and forget the pain, but like I said I don't think mine compares to yours Alan. Chris-can't you lose yourself in something that takes your mind off the sci. I learned to love the law-not the Arizona Asshole that I've seen on news specials, but at least my job gets me involved with other peoples troubles and I forget my own. Alan, do I have the right Sheriff in mind? I thought Wyoming was redneck but he makes us look like the ACLU. I'd like to see him try to figure out what type of punishment is appropriate for a dope smoking Quad or a paraplegic pothead. we're already in a prison worse than what he could dish out. All I've done is given you my thoughts, but that's about all I've got. I've had my share of pep talks too and they usually bounce off so don't consider this as a pep talk. we're all in the same boat pretty much. I feel for you if nothing else. WR
Sue Pendleton
06-14-2002, 07:49 AM
Shoulders don't have to wear out, Chris. Many people head back for a few sessions of PT to learn exercises to keep the muscles strong without wear and tear on the joints. But everyone does age, some better than others. Take a look around at the able bodied folks in your area. Some 90 year olds do better than some in their early 70s.
And who cares if your personality isn't exactly super hero status? Maybe you could start looking around for a person or two with different ailments to form a group home with if you fear being left when your folks go. I always figure it's best to have a couple plans of action in the wings depending on how things go. Your hitting 20 years post and that must be depressing too. Maybe time to treat yourself to something? How about planning a housewarming party? Always nice to meet new neighbors. Never know what cute thing might show up at the door--alone.
Anyhoo....I'm being super wimp today. It'sdreary, raining and miserable here today and I see yet another doctor for the pain in my side this afternoon. Haven't been felt up by this many guys since high school.. http://sci.rutgers.edu/forum/images/smilies/wink.gif
Naah, morphine to this point has never helped in any form, oral or epidural. Whenever I try to reach high doses of an opiate to see if they'd provide relief, constipation winds up screwing things.
Whiterabbit, demerol isn't a good med to use on a regular basis - it apparently has some bad metabolites. Can your doc get you IV morphine?
whiterabbit11
06-15-2002, 04:07 PM
Alan,
I've been either working or resting the last 2 days so I just now saw your question on Demerol, I an A #1 fan of Demerol and a lot of Doctors do seem to dislike it, but I'll bet my life they'd be the 1st to scream for it if it was all that helped. My 1st experience with it was when I developed a bad case of osteomyelitis. My primary care doc (now known as Defendant) let me lay in soggy blankets shivering and side aching to the point of tears until the Orthopedic Surg. ordered Demerol and within 5 minutes I was dry, watching M.A.S.H. re-runs and doing crossword puzzles, even having visitors. They fought back and forth until the ortho. and all the ward nurses ganged up. My new Dr. said ALL the opiates had drawbacks -but IF IT STOPS MISERY USE IT! I was on a steady dose of Demerol for several months before and after the hip removal and again for 6months straight for out of control spasms. For ahile I got 50 mgs an hour I.V. when they were real bad and every 3-6 hrs when they settled down. I had few side effects-if the nurse gave it too fast it would burn and sometimes cause nausea, but they'd follow up with phenegran and the nausea went away. If it shortrened my life, I don't really give a s---. at least it made me comfortable.I've said many times 1 good year would be better than 10 the way I felt and still do. I am often scoffed at by some docs for being an addict, but they are not a quad, trying to earn a living, with one missing hip, a ruptured rotator cuff and a shoulder that sounds like a car with bad brakes, metal to metal every move, and a spinal column shaped like a bad 'S' so screw the metabolites. Sorry to rave on, but the answer to your qustion is 'no' the docs who know me drag it out when they see me coming. FYI-one Dr. told me that Demerol (meperidine) was discovered by somebody in a drug infested area of the West Coast i think looking for a new high. WR
whiterabbit11
06-15-2002, 04:14 PM
Alan, I never did answer the question-the doc I fired insisted on morphine, but it did nothing.WR
Don't argue with what works. I wonder if IV opiates would do me any good.
100 mg Demerol IV with 50 mg Vistaril worked after my fusion, but it made me high as a kite. After a different surgery a few years later, demerol did nothing.
Alan, I share your problem. I have been a C5 for two years and though I am able to walk and get around pretty well, the increasing central nerve pain I have been experiencing is beginning to limit my activities. Both of my legs are always burning and the problem continues to get worse. When I spoke with a neurologist up at Mayo and described the condition, his comments was that there was not much out there in the way of medication but I would be well if I could just find a way to get my mind off the pain. I personally believe that every doctor that reacts that way to Central pain should be subjected to it them self to see how easy it is to take your mind off of it.
I presently get more information from this web site on how to deal with pain then I do from my doctors. It seems that I read more and more about how pot is an effective means of dealing with the pain. Just can't get my doctor to perscribe it.
Originally posted by alan:
This may belong in Life, so feel free to move it.
21 years ago today, I heard the fateful words, "You're paralyzed, and it's hopeless." A C-5 quadriplegic. Natually, I was devastated. Little did I know that I soon would be wishing that was true.
I always thought "paralyzed" meant you can't move or feel. A month after the injury, I started feeling - pain. All over my body, where I wasn't supposed to feel anything. The doctors said I wasn't having pain. My brain said otherwise, and has said so more loudly ever since.
The pains kept intensifying, and further limiting what I could do. I once could push a manual chair up a hill (with hill climbers) - now, I can barely drive an electric chair. I could exercise, and take tough PT - now, I can't exercise. I could go places - every year, fewer and fewer places, and now I'm homebound. I could type long letters - now, even this is a chore. My central pain is no different than a progressive disabling condition, only I started out disabled and get more so.
How about just a cure to allow me to be a "regular" quad, and do what other folks my level do? Is that really too much to ask? <sigh>
mike
Yep - just dunk those doctors into gasoline up to nipple level, light 'em up, and tell them "get your mind off the pain - there's nothing we can do for you."
whiterabbit11
06-23-2002, 04:26 PM
Alan,
I'm committing your gasoline answer to memory. If Iget to use a version of it at my ex drs. trial. I'll give you the credit for it. I was once laying on a bed flopping around like a fish out of water for an hour begging for Demerolwith my BP in the 200's while Doctor defendant made me promise over the phone to make an appointment with a substance abuse counselor and not drive home before letting the nurse put it in my I.V.WR
It probably won't make a difference to the doctor, but it can't hurt to suggest he think about it. Good luck.
julia
06-26-2002, 08:48 AM
How can you live like this?
I've got no other option, being physically incapable of doing myself in.
bschiner
07-03-2002, 09:01 PM
Alan,I do not know if you remember me,my mother taught you in nursery school at TA,I grew up in Randallstown and remember you.I recently put in a pool and This wonderful therapist comes over and does some relaxtion thing in the pool and makes me completely relax and than while still floating in the pool she gives me a complete massage(most of it i do not feel but it is great for circulation) and than stretches my muscles.When she is done my pain is minimal.I live about 35 minutes from you and you are welcome to come over and give it a try
Brian Schiner
I remember you. I heard you wound up in a similar mess.. At least you found this site - it's really useful.
Thanks for the offer. I'd like to try it, but 35 minutes is well beyond my traveling range these days, even on the rare days I'm able to get out. I can't even get to University of Hopkins, despite needing to find a neurosurgeon who knows something about spinal cord injury. I'm hoping I can find one close and be able to go see him..
I actually did some pool therapy in earlier years. Didn't help the pains any,, but the floating was fun. I went to a massage therapist a few times, too. She was cute.