in pain and depressed

[alan]

Thanks to my post-SCI pain problem, I have not been able have any kind of life in the 20 years since I broke C-5 and C-6 in a diving accident. Where are the pains? Everywhere, just about. Here's the list, with a few details:

Shoulder blade region - level 10. Area burns, feels tight, and feels like the shoulder blades and vertebrae in between are sticking out through my skin. This area affects my use of my arms.

Abdomen - level 10. Entire abdomen burns, and feels tight (like a heavy, hot object is laying on it, or like my skin has been scraped off. Because of this pain, I always feel full and abit queasy, so I have to force what little food I eat. Breathing is painful, since the action moves the abdomen.

Hands - level 6. Tingle, burn, feel heavy, and feel like fingers are stuck together.

Legs - level varies from 8 in ankles and feet to low level in thighs. Legs, feet, and toes feel stuck together. Some areas burn.

Like most every other quad, I have a scoliosis, so I feel off-balance constantly.

Because of this severe pain syndrome, I don't sleep, and basically have no life. I don't even go to doctors any more. Paralysis is nothing compared to the pains. I'm depressed, and wish I could I just end these pains somehow, but I have no clue as to a way to do myself in, even if I wanted to. I've tried all sorts of meds, spinal cord stimulator, alternative therapies, and no joy - the pains just keep intensifying with time. I've had numerous MRIs over the years, and a laminectomy back in '87 to look for the cause of the pains - no syrinx or anything.

I'm at the end of my rope, and don't know what to do. Nobody deserves to be in pain like this. Any good ideas would be appreciated,

[teena]

I can only imagine the pain you are having...I do not have an answer for you, but I just wanted to tell you to keep your chin up! I am not sure what would be worse...the pain or the depression. I just joined the forums because I have a friend with a sci. Please email me privately if you can...I tried emailing you, but your address is not "real". I had already emailed you and it is too long to email here...no answers, just moral support!!! Or is moral support allowed here? Hope so! I will not be able to reply until tomorrow...

My email is heartscriber@excite.com

Teena

[alan]

My email address is alan@min.net.

I think the support I need ended when Dr. Kevorkian went to jail. I've got support here, but it doesn't make the pains go away, or explain why they only intensify, never decrease. I'm past level 10 now, and my pattern is that the pain level never drops once it hits a new level.

In my next life, I'll know to panic when I'm stuck under water. If I had panicked the day of my accident, I would have missed all this fun. Instead, by listening to the advice of swimming teachers, I bought myself a life sentence of pain and paralysis that I can do nothing about.

On a pain note to everyone - does anyone here have a morphine pump? If so, how does it affect things like transfers or turning in bed? Can movement pull the catheter out of the spinal canal?

[Scorpion]

Alan, a buddy of mine had a baclofen pump, and he was very flexible and active with no complications. I imagine the morphine pump would be similarly reliable, but I'm no expert.

~Rus

"Because you're not promised tomorrow." ~ Stuck Mojo

[marmalady]

Hi, Alan,

My son is C5, and has a Baclofen pump; I understand that a pain pump works on a very similar basis; his pump is about the size of a hockey puck, and sits under the skin on his right lower/mid-abdomen. It doesn't interfere with transfers, or bed mobility; he sleeps on his stomach quite a bit; we have to be a little careful doing transfers as to where and how we place our arms, so as not to kink or displace the catheter, which runs from the pump to his back,at about the lower thoracics. Other than that, the only hassle is that jeans he wore pre-pump are a little snug now, because of the placement of the pump in his abdomen, and he's had to get some new duds. I know two people who have close relatives with pain pumps, and they all say it's helped them greatly.

Good luck and God bless.

[KLD]

Alan, a morphine pump is essentially the same pump used for Balofen, in fact it was used for Morphine long before it was used for Baclofen. You can have a catheter externally placed (this is usually done in the hospital) for a 24-48 hour trial to see how you respond to intrathecal morphine prior to having a pump placed. While it helps many people, it does not help all. Some also find that the addition of clonidine to the morphine is helpful, so finding the right dose and combination is important.

Properly placed, an implanted pump does not really limit you, except that you cannot have an MRI, and you should not scuba dive as the change in pressure can effect the dosage. If you are considering this, be sure the pump is placed by a surgeon who has done a lot of these (don't be someone's first one). While the catheters can break, and as with any implanted device there is some risk of infection, the vast majority of people who have implanted pumps do well. The pump needs refilling anywhere between every few weeks to every few months depending on the drug and dosage, and this is an outpatient clinic or even homecare (someplaces) procedure.

[alan]

KLD, can they test various drugs during tha 24-48 hour period you mention? For example, if morphine doesn't work, dilaudid might (with or without clonidine.) If I go for a test, they ought to try everything in their arsenal.

I couldn't get MRIs during the period I had the spinal cord stimulator, either. Had to use myelogram CT scans instead.

[smokey]

Alan, you sound like a big cry baby. Wah, wah,wah. All you want is some kind of drug to get a buzz-on and cry about how tough you have it. Do you think that you are the only one with paralysis and pain? Stop the "woe is me" crap, people like you make me puke.

[alan]

If all I wanted was a "buzz," I could go the illegal drug route. All I want is something to control the pain without messing with my head, so I can get some enjoyment out of my life.

Never said I was the only person with paralysis and pain - obviously, plenty of paralyzed people have pain (to varying degrees,) However, it seems (according to several of the pain doctors I've seen over the years) that both the extent and the intensity of my post-SCI pain syndrome is unusual, if not unique. Seems I was more unlucky than most.

Am I whining? Damn right I am. I've been living with this for 20 years, with no end in sight, and that depresses me, so I come to an SCI pain forum to vent. Sorry if that bothers you.

[antiquity]

Alan, you don't need to explain. Everyone with SCI suffers residual effects. Care/Cure is a site for everyone to come to for help and/or support.

[alan]

I'm embarassed about how little I'm able to do for and by myself. I'm certainly not sure how much more I could do if the pains were controlled, but I am sure it would be more, judging by posts I read from other C-5s.

[teena]

Alan,

Here's a thought...

Instead of being embarassed at what you can't do, why not be proud of what you can do! Keep keeping on! I am proud of you because you have sense enough to not give up...and enough hope in your heart to keep searching for answers!

Teena

[alan]

There's so little I can do. I can hardly even type any more. My computer knowledge is almost nil. I'm almost totally helpless due to the upper back pain (as a C-5, I should be able to do at least a few things to take care of myself), yet I feel totally unmotivated due to all the pains. I apparently have a lot of years of life left, and my mother of course won't be around for all of them (I have no idea who will handle my care in the future), so I've got to find a way to get these pains under control so I can get motivated and be able to do the things my peers do.

Thanks for your support. I do still harbor some hope, amazingly enough, but it's less as each day goes by.

[teena]

Alan,

Any hope at all is still hope! Keep the faith!

Teena

[Spazz]

I have been a quadriplegic for two years and have had severe neurogenic pain. That was until the day I smoked marijuana it was amazing at how the pain went away. It felt like my legs were in air. I am not telling anyone to go out there and try it, but I did use a research. I found out that not only does it relieve pain but also helps with spasms significantly.

[alan]

When I used marijuana, it heightened my perception and made the pains even more intense.

[Christopher Paddon]

smokey sounds like a nice guy/ girl

[Spazz]

You know what Alan I'm getting pretty sick of you. All you do is complain. I've read all of your posts even when somebody tries to compliment you or give you support, you complain about that. You never thank the person, all you do is go on about your depressed life. Think about the people who have worse spinal cord injuries than you like Christopher Reeve who can't do anything but blink, and never once have I heard him complain. All you do is talk about how you are at the end of the line and are ready to kill yourself. You make me sick. I have neurogenic pain too but I don't complain about it nearly as much as you, let's just all feel so sorry for Alan.

[alan]

I've never denied there are people in worse shape than me. I've said over and over that I appreciate the support I get from these forums, Dr. Young and the nurses are an invaluable resource we're all lucky to have. When I have an answer to a question, I enjoy giving it. I don't like being so controlled by pain, and have said so. That being said, I can certainly understand why people can get fed up by some of my posts, but this is the only place I know where I can vent.

[Christopher Paddon]

Alan,

I agree - these forums are a place you can complain as much as you like - I don't think the nasty remarks some people make are very helpful - it's not a competition to see who's suffering the most or who's the bravest

[calico]

Alan, no one has to read your posts. A person chooses to read your posts. If they find them offensive or irritating in some way, they can choose not to read them. I don't understand the problem.

Calico

[teena]

Christopher and Calico,

I couldn't have said it better myself! I support anybody who is in pain trying to find relief...and keeping from being depressed if possible. And not giving up hope. That includes everybody! Shouldn't we all try to support each other instead of dragging each other down? That's why this is called a pain forum. To let somebody know you are in pain...and provide answers for each other...

Also, Christopher...check your birthday on your Member section. We were born the same year, but you are 900 years older than me! >>smile<<

Teena

[Scorpion]

One of my best friends is a C-4 quad (I'm a C-6) and while his situation is worse than mine, he still listens to me bitch about my SCI and I do it for him. If I'm too whiney, he lets me know--that's what friends are for. But sometimes we all need to vent, and just because there are others worse off than you doesn't mean your situation doesn't suck donkey right now. http://sci.rutgers.edu/forum/images/smilies/smile.gif

I'm pulling for you Alan, and all of you who fight the pain everyday that I can't imagine. I fight pain, but not nearly to the degree of others, so I say keep up the fight! And we all deserve to whine once in a while.

~Rus

"Because you're not promised tomorrow." ~ Stuck Mojo

[alan]

Thank you all. I do hope to one day be able to post good news and shock the hell out of everyone.

Does the Yankees trailing 15-2 count as good news? :-) Not that I'm a Diamondbacks fan, but I am a lifelong Yankee hater.

[Town]

My input for what it is worth. Constantly thinking about you pain which is evident by your postings is only going to make it worse. No drugs of any kind are ever going to help and coming to that realization is the first step. I used to constantly think about my pain and complain to eveyone I could find that would listen, and it only got worse. The only drug that will ever help is your mind. So tomorrow don't mention your pain to anyone and try not to think about it yourself, when you find yourself thinking about it think about something else. Do this for a day, then a week, then a month, then a year and your pain will be gone. My ass burns as much today as it did 6 years ago if I think about it, but I don't and it doesn't bother me in the least. I don't mean to be cruel but I don't believe there are any miracle cures. You can never make the pain go away but if you don't let it bother you I think you will be surprised that eventually it won't.

[David Berg]

I'm confident of one after reading numerous descriptions of pain from people with the type of pain that Alan is experiencing, central pain (neuropathic pain caused by damage to the CNS). When you have really severe neuropathic pain over your whole body it can totally consume your existence to the point that you simply can't "just not think about it." You wouldn't believe some of the accounts that I get in my email sometimes, such as (and I'm paraphrasing simply because I'm not looking at it right now):

"like the worst sunburn you've ever had many times over, then being wrapped in foil with electrical current flowing through it and at the same time being roasted over a fire."

I do agree that focusing on something else, anything else, can help as a distraction, but you really can't put it in the back of your mind. It's simply too powerful for some people.

Dysesthesia is a nasty experience. Watching someone I'm close to go through this experience is why I'm pushing so hard for a treatment that actually works.

David Berg

[calico]

I think Alan was trying to change the subject, perhaps using his own distraction technique, when he brought up baseball in his last post. Does anybody here follow baseball?

I live on hope and distraction techniques. Those are the things that have worked the best for me.
They didn't work for years, they work now, they may not work tomorrow. For me, for now, in order to THRIVE I will have to get rid of this pain so I don't believe I'll be thriving any time soon. For now, I'll settle for living with the least mental and physical suffering possible, not because I want to, but because that's what I can do now.

I'll never use the word "acceptance" or tell someone to accept their pain and suffering any more than I would tell someone to accept an elephant standing on their foot. So I HOPE that something will happen to make the elephant get off my foot and I'm going to do my best to distract myself until it does.

My ability to cope is on my timetable and not anyone else's. It would be great if someone's wishing I didn't suffer would end my suffering, but it simply isn't so.

So, what about that baseball?????

Calico

[Christopher Paddon]

Teena,

I take it you're female - how do you feel about older men?, perhaps we could get together or is 900 years pushing it?

Chris

[teena]

Chris,

I think 900 years is a bit much! You would be a very old friend! >>smile<< But since you wiped the egg off your face and fixed your birthdate, you may consider me your friend! I was just concerned that somebody would think I was as old as YOU! Ha! And since this is the pain forum and I should be discussing pain, I hope everybody is feeling better than they expected!

Sorry to reply here, but I don't have a regular email address for Chris...I hope everybody got a laugh anyhow. Sorry it was at your expense, Chris. I will confess, today is my birthday and I am getting old, because I just hit 43! Now y'all can laugh at ME!

Teena

[alan]

David, you hit the nail on the head.

Meanwhile, one of my attempted distractions, my Ravens, are still looking for an offense. I can't see them winning 11 straight games through the Super Bowl again this season.

[David Berg]

Calico,

I'm another person that isn't a D-backs fan, but I'm glad to see Phoenix win the series. They deserve a decent major league sports team.

I moved to Phoenix from St. Louis in '86, right when Phoenix was so excited about the football Cardinals coming. I kept telling my friends, "No! You don't want the Cardinals! Wait for another team!" Everyone ignored me, but within a year most of the people in the area realized that they'd made a mistake bringing in Bill Bidwell and his team.

I left the Phoenix area before the D-backs started up, but now with the D-backs they finally have a chance to experience a world-class sports franchise.

OK, OK, so I just realized that I'm forgetting about the Suns, but I've always been more of a baseball and football fan.

A hearty congrats to the D-backs, and to all of their fans in Arizona and elsewhere.

So, how's that for a distraction from the grim topic of this forum? If you want to experience pain, try being a football Cardinals fan for awhile. http://sci.rutgers.edu/forum/images/smilies/wink.gif

David Berg

[davecarl]

There are several pain studies that are going on in Boston that may be of some value (probably not on a timely basis)as follows:

1. Massachusetts General Hospital is conducting a research project to evaluate an investigational drug as a treatment for specific types of pain caused by spinal cord injury (SCI). Individuals between the ages of 18 and 85 with SCI who have persistent pain for a minimum of 3 months may be eligible. For more information, please contact Loredana Jinga (the study nurse), or Manisha Thakuria (the study coordinator)or Christine Sang, MD, at 617-724-0330, or email PainTrials@partners.org.

2 Study sponsored by Physical Therapy Researchers interested in defining common problems experienced by sci patients. Contact Beth at (617) 377 6216 or e-mail scisurvey@hot mail.com.
(this was listed in the Boston Chapter SCI newsletter Novenber 2001.

[calico]

Thanks, David! You provided me with both a sports education AND a distraction!

Calico

[alan]

Every football fan in Baltimore is glad that Bill Bidwill didn't move his team here.