pain and your attitude

[adi chicago]

pain and your attitude.
what do you do when your pain level is at a high level?
cry?
curse?
laugh?
unconcerened?

[Rbrauer]

Laugh typically.

[Eileen]

Take pain meds and try to distract myself.

[bob clark]

Beat my dog mercilessly then shove dirty knitting needles into my side where my neuropathic pain refers to. If that doesn't help then I come here and write some tripe.

Hey Adi, how's your New Years resolution treatin' ya?

Bob.

[woman from Europe]

I distands myself from the pain, like I am going out of it. And I try to get somebody to visit me or take a call so I can talk to somebody of other things. I don't read or write on CC then.

But since I started with clonazepam in 2000, I have pain seldom. But I had terrible pain before that. Strange, in some way I have forgotten how bad it was for 20 years. But I remember the pain when I get it back.

[JerseyGirl]

Mind over matter. Along with the pain meds. Nothing will ever completely take away the pain. You take what meds you can, and deal with the rest.

[rcechser]

Hey Adi, how's your New Years resolution treatin' ya?

Bob.
My thoughts exactly!

[adi chicago]

Beat my dog mercilessly then shove dirty knitting needles into my side where my neuropathic pain refers to. If that doesn't help then I come here and write some tripe.

Hey Adi, how's your New Years resolution treatin' ya?

Bob.
LOL bob ....damn pain and weather ...i scared my cat yesterday ...i hee hawed as a lion .:)

[dgrotz]

Deal with it :mad:

[Kathi49]

Cried in the begininng when it was so severe and had no answers.

Nowdays, kind of laugh about it. But like woman from Europe, I do pretty much what she does. And, yep, Clonazepam has helped me dramatically. It is rather odd, sometimes I think I have just grown used to the pain. Either that or distractions really work.

[JerseyGirl]

You know....I can't help but wonder what it would feel like to not have pain, even if it's only for a couple of hours. How awesome would that feel? I have truly forgotten what it feels like to not hurt. It's been 20 years, and to have just 1 day with no pain. Oh well, whatta you do? That's life!

[David Berg]

You know....I can't help but wonder what it would feel like to not have pain, even if it's only for a couple of hours. How awesome would that feel? I have truly forgotten what it feels like to not hurt. It's been 20 years, and to have just 1 day with no pain. Oh well, whatta you do? That's life!
You're not alone. I know of people with all-over central pain who have no normal touch sensation anywhere on their body and literally can't remember what it feels like.

[JerseyGirl]

With the risk of sounding selfish, I'm glad I'm not alone. It's a very difficult thing to deal with, and most people don't understand it. That's probably the most frustrating thing of all.

[arndog]

You know....I can't help but wonder what it would feel like to not have pain, even if it's only for a couple of hours. How awesome would that feel? I have truly forgotten what it feels like to not hurt. It's been 20 years, and to have just 1 day with no pain. Oh well, whatta you do? That's life!

I could have written that, I so agree with you and feel the same way...
jon

[Sue Pendleton]

Depending on where it's at and what kind oxycodone, ultram [new to me], lidoderm or capsacian patches. And distraction like playing with my dog or calling a friend or going outside if it's nice. Bitching about it doesn't make it go away and when you concentrate on it I think your brain kind of hardwires it in place after awhile.

[woman from Europe]

I am wondering why the doctor are so afraid of trying Clonazepam. It is difficult to get it here too. I have seen here that only Kathy49 and Danine is using it.

I have tried Neurontin and I hated the way it made me feel and Clonazepam was really saving me from the pain. It is an anti epileptic medication like Neurontin and Lyrica and one of the side effects is it is making your mood stable. It is often used in psychiatric patient for that reason. I see many people here are taking antidepressents so what's the difference. I have taken antidepressent too and it did not help a bit.

[addiesue]

Clonazepam
Every time I take that stuff I go straight to sleep. Or I call people I didn't mean to and then go to sleep.

[woman from Europe]

I have taken it for 8 years and I don't even get drowsy from 4 mg.

LOL, but I gave it to my daughter one time she was really upset, half 0.5mg, and she got hallucinations. She was 15 and the same weight like me so I did not expect that reaction. At least it calm her down, she was so crazy because she had got pinworm and it was in the middle of the night and no farmacy was open.

[Princess "Leia"]

You know....I can't help but wonder what it would feel like to not have pain, even if it's only for a couple of hours. How awesome would that feel? I have truly forgotten what it feels like to not hurt. It's been 20 years, and to have just 1 day with no pain. Oh well, whatta you do? That's life!

I hear ya JerseyGirl I too forget what it feels like to not be in pain. I like to describe my numbness, neuro pain like this. It feels like I am wrapped in very tight ace bandages that are sealed in wax and my body has fallen asleep but it is wearing off, likes pins n needles but throbes at the same time. I also have no normal touch sensation anywhere except my face. I sometimes think I'd rather the pain than the numbness, it makes life quite miserable to not be able to feel.

[Princess "Leia"]

pain and your attitude.
what do you do when your pain level is at a high level?
cry?
curse?
laugh?
unconcerened?

Adi I sometimes do all the above but especially curse. I cuss like a drunken sailor in a bar, I shock even me. When I am having a really bad day though I usually try to stay away from others, I am way too awful to be around so I will take a hot cup of tea, my medication cocktail and go to bed.

[alan]

My pains are always at high level. Nothing distracts me, not even Ravens' games.

[dejerine]

Woman from Europe

I have tried almost everything, and the Clonazepam they started at USC rehab continues to give the best relief for me. It does not stop the pain, but it dulls it a bit and mainly stops the panic I would otherwise feel. If you cannot get Clonazepam, you should be able to use Valium instead. I have found similar results from both, but the Valium makes me a little nauseated at the doses I take. The terms are a bit arbitrary but valium-like druge are usually called muscle relaxants, benzodiazepines, or even hypnotics, although they are a little weak to be hypnotics. Valium is very inexpensive and clonazepam is now generic in the U.S. I suspect your pharmacist could order some generic clonazepam in for you. The tricyclics absolutely ruined my teeth. The lack of saliva makes your teeth unable to fight off bacteria, so it has a huge effect. This alone would make clonazepam something to consider. I think all the drugs act by quieting the CNS. I know some on opiates say it directly relieves pain, but I am not able to tell from the posts if the pain relieved is neuropathic, although it is pain that follows SCI. Even opiates may actually be working by quieting the central nervous system. I am not convinced opiates are a SPECIFIC for neuropathic pain, mainly because the NIH continues to report they have a very hard time with severe central pain. At UCSF they gave me opioids IV in extremely high doses, administered by an anesthesiologist, but it had no effect whatsoever on the burning pain. For a very long time and in many offices, doctors have reported no benefit from opiates in Central Pain, so it is hard for me to know what to make of people, some very reliable, who say otherwise. It makes me suspect CP comes in different flavors.

[Suzie Q]

Take over amounts of meds, sleep if possible, cry, try to distract myself some, think of evil plans to rule the world, cheap sex, lol, i made that up about the sex...:zombie:. LOL

[woman from Europe]

dejerine, I don't have any trouble getting clonazepam. I take 4mg every night and the nevrologist has told me I can eat up to 8mg a day if I want. Besides that I have a Temgesic patch 5 mg and then I am painfree most of the time. I am very sensitive to any medication, people are laughing of me because meds either doesn't work at all or work in a small doses.

Here they never give Valium for spasmes or pain, only for anxiety. So my house doctor never give me any Valium. And the clonazepam is cheap, about 6 dollars for a month use for me. The patch I get for free. Before the patch I was taking some muscle relaxants, but the Health Department stopped those pills a year ago so I got the patch instead from my pain doctor. She was my house doctor for some years 25 years ago and knew the pain I had from that time and had taken extra education for pain in the meantime so I did not have any trouble to explain her my pain. She was just happy she was able to help me this time.

Even 25 years ago she use to say that life is not only about quantity but more about quality.

[just4ulowg]

I Try To Deal With It !!!

[Evonne]

As crazy as it may sound, i find that working makes me forget my pain. If i am in a meeting with someone, or at lunch with a customer or on the phone with a client, or on a conference call, whatever i might be doing of a day at work, i do not think about my pain. After work and when i drive home in the evening is when i REALLY tank. I m pretty useless after dinner and when i am lying in bed like this one the computer i can feel EVERY single ache in my both hands & arms and both legs & feet....in general i hurt EVERYWHERE. I know i hurt everywhere all day long but if i remain distracted, i dont think about the pain as much.

E:D

[betheny]

If I can't distract myself I go for heat. My worst parts are usually my feet and hands...sometimes just washing dishes help my hands. If you can get in hot water that's the best of all.

When I have a kidney stone or the pain is more widespread, it's drugs and bed for me. I lay in bed and concentrate on how it feels where I DON'T hurt. Deep breathing, visualization yoga blah blah blah.

If I can feel a pillow on my face, where I don't hurt, and focus on that spot it helps somehow.

I used to cry. Didn't help much.

[smokymtn memories]

They're still working on a combo that will work for me that I can afford. I took my last topamax yesterday and found out the replacement cost just as much. Before we could get things straightened around the doctor had was called out for a death in her family.

I've got gabapentin, darvacet, and methalcarbalmol to keep me company till she returns on Monday. Could be an ugly weekend.

If it gets bad, I usually warn those close to me and stay to myself. I have'nt been doing this near as long as some of you and I don't remember what it feels like not to hurt. What scares me sometimes is thinking about how much longer I'll be doing it.............

[jody]

yes, the hot water does help for me. it seems to be the only thing to make the stabs and burn go for a while. epsom salt for sore muscles. adi, that drug wfe used, maybe a smaller dose? and why is it better to be in pain, or drunk than a little sleepy? maybe try it again, but less of it. a little xtra sleep is welcome in my book. seems like you are up as late as I, is that the right spelling? is that the same as colapin? what is the actual drug wfe?

[steve garro]

yeah - in pain, allmost all the time. sometimes i'll wake up and not be in pain and just enjoy it for a little while, but as soon as i get up it starts in my feet. i was not good to my body in my previous life. world bike touring/ultra endurance racing/canyoneering/hard physical labor {once i rode 240miles in 24 hours - i'm sure i'm still paying for that} bad shoulders, bad back, bad neck broken bones.......blahblahblah. still, it's the spasms that kill me and make me question why i'm here. i'd gladly run with the pain if the spasms would just stop!!!!:zombie::zombie:!!! steve.

[rybread]

I start squirming around in my chair, doing one weight shift after another leaning side to side hand forward if I'm in my chair. If I'm in bed, I do the best I can to find something funny on YouTube or put on a movie and it's really really bad I'll have some alcohol to try to tune it down a little bit, but that only happens once or twice a month.

[dejerine]

Betheny

Actually, I am sincerely glad to hear you have the sensation of touch on your face. I remember about a month after the injury feeling very frightened because I did not have touch, even on the face, only burning. I Kept trying to remind myself what touch felt like so I wouldn't forget it, but by six months I couldn't remember what touch felt like at all, because I did not have it anywhere. I did futile things to try to find it, like feeling my corneas or inside my nostrils. I often thought if I had ONE place where I still felt touch, I could keep the memory, and for some reason it was important to retain the capacity to remember touch.

You freak out at first, then later, after you have had some time to think about it, you freak out even more. Just kidding.


Thanks for your Dylan quote. It reminded me of the Hugh Nibley quote:

"God has told us that in the hereafter, the seating order will be reversed."

This is about the only inspirational idea that appeals to me right now. I generally can't process motivational cliches. I have a bad attitude. I have been cliche'd about pain for so long that I don't want to hear that record one more time, it seems. The snow is about two feet deep and I still go in shorts and flip flops to avoid the touch of clothes and shoes. Of course, this is insane, and there is this tendency of people who don't realize that you actually are insane, to tell you that it is insane to go around dressed like that. Generally it goes like this:

Ordinary godfearing individual at WalMart: I guess you don't know its cold outside

Me: It's a medical condition

Ordinary godfearing individual at WalMart: You're lucky, you don't feel the cold?

Me: I feel it. It is just that the touch of shoes is worse. It's called central pain.

Ordinary godfearing individual at WalMart: Let's go Harold.



If I had told her I was an alien from Jupiter and was used to colder temperatures I would have had more credibility. I am just not a very credible person.



Arndog mentioned that he detected resentment in me, but I don't see how this could possibly be true. Can you imagine Jon saying that :)


Just kidding Jon.

[michchick]

i scream blooody murder. Ive had people knock ask me if Im ok. My mom broke down the dooor i screamed so loud. Anal pain and bleedy I wouldnt wish on my worst eneemy

[michchick]

Wish they sold dalaudin or fentanol in 6 packs then Id be a happy camper!! lol

[duge]

Like right now I try to do something to get my mind off my feet ! but the lyrica is NOT working to well today...... so I just grin and bear it!

[JerseyGirl]

I usually try to find some kind of distraction when the pain is almost to the point of driving me mad - anywhere from trying to watch a movie, to working on the computer. I have learned over the years that the more I focus on the pain, the worse it is. So I take the maximum dose of pain meds allowed, and move on. It at least gives me something else to think about, instead of focusing all attention on pain.

[arndog]

Jerseygirl - spoke like a veteran ! What great advice IMHO. For me it is , lying down with headphones listening to the 3 B's - Bach, Beethoven, Brahms or watching 'heinous sexual based crimes' on Law and Order SVU. Or if it is really driving me mad, hugging my dog.... and taking the maximal meds and know that tomorrow will be better day.

[JerseyGirl]

You know, the one thing I have learned over the years is that no one else likes to hear you complain. So even on my worst days, if a coworker or anyone asks "How are you today", my standard answer is a forced smile and a "Good!", or "Great" - depending on who's asking. Most people don't understand the level of pain we have to deal with, and it's a relief to be able to come here and express those awful feelings.
arndog - the veteran sounding part of me comes from my family, who has the attitude of "suck it up" and press on.
Adi - maybe you can find something that would be truly distracting and help you take your focus from your pain. Sometimes, if you don't move around enough, it can make the pain worse than if you sit/lay completely still. Just my opinion!

[back2back]

Years ago I had a therapist tell me that my pain was my own, I could either let it dictate how I lived my life or I could choose to live my life the way I wanted. Made sense to me. I am always in pain, have been most of my life, at least I don't remember a time when I wasn't. I have been lucky where pain medication is concerned, I won't take all they want to give me, things like anti-depressants take too much of 'me' away, I would rather have the pain and be present for my life. Like most everyone here I have a lot of things in my life that I use for distractions. I have often said if my it were not for my dogs I would never have made it this far. Knowing that another living being is counting on my to live gets me up in the morning and keeps me chugging along. Plus

[David Berg]

back2back, it sounds like you've found a balance and a resolve that allows you to survive on a day-to-day basis even in the face of chronic pain that you can't do enough about being an everpresent factor in your life. Arndog and Jerseygirl (and others here I know I'm leaving out), you have some things that work for you as well. While we all continue to root for any research out there that might bring further relief, life has to go on. When you're faced with something like this, that's the one approach I've heard over and over that helps people deal with their lives and manage to move forward.

[dps1]

When we're in awful pain we realise just how precious feeling 'normal' is. I wish regular people could see that. The world would be a better place, as poeple would appreciate everything in life more.

http://alzheimersdiseaseanddementia.brighterplanet.org/

[brucec]

When we're in awful pain we realise just how precious feeling 'normal' is. I wish regular people could see that. The world would be a better place, as poeple would appreciate everything in life more.

http://alzheimersdiseaseanddementia.brighterplanet.org/

we don't appricate it because it is normal
when we drive a car to work, it's normal until you lose that car

wasn't there a saying about not appreciating something until you lost it, why is that, how can we change it?

[lespaul]

Moods change with pain levels, sometimes im so taken over by pain everything seems hopeless and im my own worst enemy I can bring my self into a state of depression that compounds everything. I have allways been a fighter this is the hardest fight i have ever had to deal with. Most of the people in my life dont understand what to do, but the pain is like nothing a well person can understand. get a hobby and at least try to do something to help. sometimes i have to cheat on meds just to get me out of bed , but there is hope, my freinds took one of my trucks and stripped it down in my garage and set it up so i could help do simple things on it. most days i just walk around and look at it, but its a H.C hot rod.part of the pain and suffering is the loss of who you were, remember if you dont fight you allready lost. t8 incomplete

[lespaul]

Moods change with pain levels, sometimes im so taken over by pain everything seems hopeless and im my own worst enemy I can bring my self into a state of depression that compounds everything. I have allways been a fighter this is the hardest fight i have ever had to deal with. Most of the people in my life dont understand what to do, but the pain is like nothing a well person can understand. get a hobby and at least try to do something to help. sometimes i have to cheat on meds just to get me out of bed , but there is hope, my freinds took one of my trucks and stripped it down in my garage and set it up so i could help do simple things on it. most days i just walk around and look at it, but its a H.C hot rod.part of the pain and suffering is the loss of who you were, remember if you dont fight you allready lost. t8 incomplete

[arod636]

Just deal with it like everything else you have to deal with sci.

[Crashbang]

it's great to read others' strategies in this thread,
but am concerned and puzzled to read that some use immersion in hot water to relieve pain?
i was warned years ago that people w/ nervous system disorders like sci and ms should definitely NOT soak in hot tubs or take hot showers, doing that could cause stroke, maybe heart attack.
if i'm wrong about this, i apologize in advance, but i would like to raise this question for further discussion in case it's correct and some folks didn't get the warning.
i'm new here, so not aware if this has issue been brought up already.
i do know that becoming overheated in general is risky and to be avoided.

i was told years ago that central pain might be due to the nervous system firing signal to make muscles twitch, to keep muscles moving..and also that the nervous system needs constant stimulation, so moving about
and shifting positions, massage and skin stimulus can help quiet the system. when it gets bad for me, i do self massage or even lightly snap a rubber band on the skin...does anyone else try this? there are lots of nerve endings in the ears, so rubbing the ears seems to bring some relief, this might help those with higher level injuries.
last week i read about animal studies using gingko biloba, it said results looked promising, may help reduce central pain. i doubled my daily dose and it did seem to reduce the intense constant burning i feel on my inner knees. it may have been a placebo effect, but i'm going to keep trying it.
anyone else trying gingko biloba for central pain?

[Princess "Leia"]

it's great to read others' strategies in this thread,
but am concerned and puzzled to read that some use immersion in hot water to relieve pain?
i was warned years ago that people w/ nervous system disorders like sci and ms should definitely NOT soak in hot tubs or take hot showers, doing that could cause stroke, maybe heart attack.
if i'm wrong about this, i apologize in advance, but i would like to raise this question for further discussion in case it's correct and some folks didn't get the warning.
i'm new here, so not aware if this has issue been brought up already.
i do know that becoming overheated in general is risky and to be avoided.

i was told years ago that central pain might be due to the nervous system firing signal to make muscles twitch, to keep muscles moving..and also that the nervous system needs constant stimulation, so moving about
and shifting positions, massage and skin stimulus can help quiet the system. when it gets bad for me, i do self massage or even lightly snap a rubber band on the skin...does anyone else try this? there are lots of nerve endings in the ears, so rubbing the ears seems to bring some relief, this might help those with higher level injuries.
last week i read about animal studies using gingko biloba, it said results looked promising, may help reduce central pain. i doubled my daily dose and it did seem to reduce the intense constant burning i feel on my inner knees. it may have been a placebo effect, but i'm going to keep trying it.
anyone else trying gingko biloba for central pain?

Crash,

if it were not for my hot soaks in the tub, hot showers on a cold day to warm the bod so I can get moving, I'd a lost it ages ago. I have aslo been in a hot tub and enjoyed it too. The hot sun really helps me as well. So for me it's hot hot hot........lol........Pam