deerme
01-10-2004, 04:03 PM
We recently had my sister and her husband over for the Holidays. My brother-in-law said, "what youre not drinking again?" I told him no not with the pain meds. He said ya know I dont understand how you can be in so much pain, see a P.M. Doc. and be taking pain meds. all the time. If you think positive you wouldnt be in so much pain. I have had 5 major shoulder operations and 3 herniated disks in my lower back. I get that type of comments alot with people who are fortunate enough to be pain free. With the type of work I do (very physical) I need the medication, Oxycontin, Neurontin. Anybody else get these type of reactions from people. And short of telling them where to go, how do you deal with them.
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Kayley
01-10-2004, 04:20 PM
I know exactly how you feel. People don't understand, and I think part of the problem is there is not enough information out there about chronic pain. I'm thinking about printing up some information and handing it out to my family and friends. People think just because we're on pain meds, we shouldn't have pain anymore. I don't expect the meds to take the pain away completely, I feel lucky if they take the edge off. And sometimes it doesn't even take the edge off if I've overdone the physical activity. Thinking positive is a good thing, but it doesn't take the pain away. And stress is our worst enemy. I'm sure alot of people have the same problems with people not understanding. I'm anxious to hear some other suggestions on how to deal with it.
cardinal
01-10-2004, 07:17 PM
Oh yeh, I can relate! I've lost a couple friends that say "My brother in law had that surgery and he is fine!" "Boy it must be nice to lay around all day and not have to work" "lady of leisure" , Gee it really pisses me off. For one, her b/inlaw had one surgery. My back is progressive problems. I did go back to work after the ist surgery. I worked for 20yrs in pain. I did minor surgeries on Fridays so I could go to work on Monday. We have a combination of issues, its not black and white. Everyone can relate with something we are going thru, but put the "whole" picture togther... now you have a different story. I wish I did have only 1 issue! But there are many and I refuse to give up, but would appreciate not being "condemned" for my suffering. Gosh, if there was a way for them to fully see our suffering, like walk a day in my shoes. I am not a quitter, never was, but now too much. I have paid my dues. Its pure "jeolousy" or just plain ignorance on their part. I say, that is their problem, I have enough.
feelbad
01-11-2004, 08:42 AM
Yes ,unfortunetly there are people who think that since you are taking pain meds, you are free of the pain and you should be out running a marathon or something.Don't you just have the overwhelming urge to just reach out and smack them in the head?I would but it would hurt too much.Having been dealing with my pain over the past few years, I have noticed something.When all I was dealing with was the problems with my herniated disc issues,I was still able to work(with the help of many Lortabs).My pain was much easier to deal with and I didn't show it (the pain)quite as much.And after my surgery to correct the problem, my friends and family are like, well you had the surgery,now your fine, and by the way, why are you still taking the pain meds ?I had alot of problems after my first surgery and ended up in even more pain after than I had going in.Now after my last surgery(and this one was an absolute killer)I have lost alot of my ability to do anything anymore,I suffered alot of nerve damage do to a "hit" nerve in my spinal cord and am suffering with central pain syndrome.Well, now I really show alot of pain now(I kind of wobble now due to swelling in my R leg,and spasticity in both legs,my L hand is pretty much useless now,And no matter how much narcotic pain meds I take,the best I can get is an 7-8,but mostly at a constant 8-9 all the time.And now, because people can actually "see" that I am in pain, it is a whole different story.I haven't had one negative comment from anyone with regards to my pain.We seem to be a "we have to see it to believe it"type of society,you know?I don't know if you will find this interesting or not, it was just a big difference in peoples reactions to me and my pain that I have observed.And I totally agree with you that some People actually feel like some kind of jealousy or something in that you are just able to do nothing with your day,when all I want to do is to be able to do "SOMETHING" again.If they only knew just what I would give to be able to work again and do useful things like I used to. Sorry, I am starting to get off on a tangent,so I will have to stop now. Thanks for listening. Marcia
deerme
01-11-2004, 02:46 PM
I work fo a company that cleans commercial duct systems ans kitchen exhaust sysyems. It is the most physically demanding job I ever had. I was an iron worker and I worked in a furniture mill. My PM Doc. is all over me to find a different line of work. I enjoy physical activities. I enjoy hard work. On weekends I cut firewood on the30 acres I own. If I give in to my pain, and lay around do nothing and feel sorry for myself, I might as well be dead.I am in constant pain, even with the Oxy. and Neurontin. When people see me doing this kind of work they assume I am pain free, or lying about the pain I am in. But i figured it out, and I have new attitude about it all. "I dont have to explain what I do to any one but myself." and maybe my wife.
tchair
01-13-2004, 09:57 AM
Many prescriptions should list as Possible side effects - "stupid comments from thoughtless ignorant people who have no medical training and have not experienced severe or chronic pain". Maybe they think we'd put up with the constipation, nausea, insomnia, and the rest but not the crap that some stupid people dish out.
deerme
01-13-2004, 11:56 AM
Yeah people are pretty ignorant. But if they get "hurt", say throw out their back or something similar its a whole diffrent story. Ex. My idiot brother-in-law, who cant believe I am going to a PM Doc. and cant drink because of the pain meds.threw his back out last summer. The way he was acting you think it was his last days on earth. Laying on the couch for days,making everyone wait on him hand and foot, non stop complaining. I made a point to go over to his house every day and smile and tell him, "this is what I go through, and feel like every day of my life-how do you like it?"
Angel77
01-14-2004, 12:54 AM
Just like people not suffering from chronic problems have good days and bad, so do people who are suffering, it's just that their life is altered by it, so they learn to cope with it the best way they can.
I have multiple health problems, the most misunderstood one is narcolepsy. Some of the comments are enough to make my head spin and steam shoot out my ears......I have been tired lately, I otta get tested for narc...I wish I could sleep as much as you....DUH... you're so lucky to have a prescription to take amphetamines to stay awake, wish I could (If they were on the dose I am on, they'd be climbing out of their skin, in the mean time, if I stop moving, I'm out!!)....or my favorite because I have a service dog who alerts on my attacks....I wish I could bring my dog everywhere I go!!...If you take my health problems, I'll throw in the dog for free!!!!
They will never understand what they can't see and they won't grasp the levity of it because most of us have become adept at hiding the severity and smiling through the pain.
I have a friend who says, just get up, you'll wake up when we're out....or lets go for a walk, you'll feel better....except for the fact that my ligaments allow my hips to ride somewhat outside the socket and leave me in tears...you get the pic.
I hear it all the time and some days I want to scream..."RUN FAR, RUN FAST OR I'LL BE HANDING YOU YOUR TEETH AND YOU'LL BE DRINKING THROUGH A STRAW!!!"
I would love for people to offer real help too....like dropping off dry cleaning, preparing meals so they just need to be reheated, taking me to doc appts., picking up prescriptions, helping with the kids so I can get some real rest, or just calling to say hi and not have a shallow conversation. The help I can do with out, is the well meant yet off putting....It's mind over matter (don't know about all of you, but I haven't seen my mind lately and that doesn't matter, is that the same?), Just make yourself do it...It's just in your head (I'm lucky enough that narcolepsy is neurological, therefore it does reside in my head...they hate that one)....If you didn't sleep so much you wouldn't be so tired....
HERE'S YOUR SIGN!!! People like that should come with one of those electronic bulletin boards that flashes the warning "suffers from foot in mouth syndrome and doesn't have a clue."
Sorry, just ranting here....I wish for a change there was a shortage in idiots. Would be a bit lonely because so many would be gone, but it would be nice for a little while!!!
Tell the bro-in-law that you'd be willing to give him a lesson in your pain....tell him to stand in front of a mack truck doing 50 and take tylenol so you are "pain free" so you can go to work, be a parent, and try to live a life that is living you!!!
Or sarcastic comment #486486....I wouldn't be in so much pain if you'd get out of my house!!! or I'm thrilled you have no idea how much effort is put behind this smile and what amount of stuff does get accomplished.
A person who has their health has no idea what real effort is. Effort is struggling to do what others do effortlessly. At times, me cleaning the kitchen is equivelant to someone healthy chasing down a cheetah wearing lead boots....they otta give it a try sometime.
I have multiple health problems, the most misunderstood one is narcolepsy. Some of the comments are enough to make my head spin and steam shoot out my ears......I have been tired lately, I otta get tested for narc...I wish I could sleep as much as you....DUH... you're so lucky to have a prescription to take amphetamines to stay awake, wish I could (If they were on the dose I am on, they'd be climbing out of their skin, in the mean time, if I stop moving, I'm out!!)....or my favorite because I have a service dog who alerts on my attacks....I wish I could bring my dog everywhere I go!!...If you take my health problems, I'll throw in the dog for free!!!!
They will never understand what they can't see and they won't grasp the levity of it because most of us have become adept at hiding the severity and smiling through the pain.
I have a friend who says, just get up, you'll wake up when we're out....or lets go for a walk, you'll feel better....except for the fact that my ligaments allow my hips to ride somewhat outside the socket and leave me in tears...you get the pic.
I hear it all the time and some days I want to scream..."RUN FAR, RUN FAST OR I'LL BE HANDING YOU YOUR TEETH AND YOU'LL BE DRINKING THROUGH A STRAW!!!"
I would love for people to offer real help too....like dropping off dry cleaning, preparing meals so they just need to be reheated, taking me to doc appts., picking up prescriptions, helping with the kids so I can get some real rest, or just calling to say hi and not have a shallow conversation. The help I can do with out, is the well meant yet off putting....It's mind over matter (don't know about all of you, but I haven't seen my mind lately and that doesn't matter, is that the same?), Just make yourself do it...It's just in your head (I'm lucky enough that narcolepsy is neurological, therefore it does reside in my head...they hate that one)....If you didn't sleep so much you wouldn't be so tired....
HERE'S YOUR SIGN!!! People like that should come with one of those electronic bulletin boards that flashes the warning "suffers from foot in mouth syndrome and doesn't have a clue."
Sorry, just ranting here....I wish for a change there was a shortage in idiots. Would be a bit lonely because so many would be gone, but it would be nice for a little while!!!
Tell the bro-in-law that you'd be willing to give him a lesson in your pain....tell him to stand in front of a mack truck doing 50 and take tylenol so you are "pain free" so you can go to work, be a parent, and try to live a life that is living you!!!
Or sarcastic comment #486486....I wouldn't be in so much pain if you'd get out of my house!!! or I'm thrilled you have no idea how much effort is put behind this smile and what amount of stuff does get accomplished.
A person who has their health has no idea what real effort is. Effort is struggling to do what others do effortlessly. At times, me cleaning the kitchen is equivelant to someone healthy chasing down a cheetah wearing lead boots....they otta give it a try sometime.
vitonxl
01-14-2004, 03:26 AM
I'm 25 and have nerve damage in my back from surgery on my L5-S1. This Christmas was the worst. I was supposed to go over my dad's then over my fiancee's. Well, I couldn't go over my fiancee's because I couldn't sit up. I even took my medication and I started getting nauses and told my girl and she understand's. Her family didn't. The next day I went over there and I had to hear it. "How can you be in so much pain and be so young". "My back hurts from picking up my kid and I was here, Laugh laugh". I walked out and got in my car and drove home. I wanted to go over a cliff. I work at a factory where I make good money to pay my dr bills and I have to here it all the time. "You have the company my the ba**s". Sorry I can't lift over 30 lbs and bend over consectively. They act like I can't have back problems I'm to young too, but I do. My Pain Dr.'s the worst! All he talks about is getting me off the oxicontin and percoset. He of course he doesn't talk about illimanating my pain. The thing is two well know surgeon's suggest going to pain mgmt. stay on my meds. and continue the best I can with my life. No, pain mgmt want to bleed me dry by making me have these procedures that don't work, because they know they have my life because there giving me pain meds. I owe my life to oxicontin. If I didn't have it I wouldn't be here. My mother, fiancee, brother understand, but nobody else. My dad asked the other day if I would help him move.
I just want to tell people do only what you can do. Don't ever let anybody tell you what's best for you and how much pain your in. Only you know how you feel and what's working to help you. If you want to keep doing your job and it makes you happy keep doing it, because once you have given up your done. Dr.'s don't care about your way of life. All the care about it is there license and making money! I hope one day I and you will find a Dr. that will care about your quality of life.
Keep your head up and enjoy your time.
I just want to tell people do only what you can do. Don't ever let anybody tell you what's best for you and how much pain your in. Only you know how you feel and what's working to help you. If you want to keep doing your job and it makes you happy keep doing it, because once you have given up your done. Dr.'s don't care about your way of life. All the care about it is there license and making money! I hope one day I and you will find a Dr. that will care about your quality of life.
Keep your head up and enjoy your time.
Rob61
01-14-2004, 01:46 PM
Just to add my 2 cents people don't understand only because they dont have to deal with it like we do, when i would tell my chiro friend that id love to give this to someone just for a day then they would understand what im feeling he would just laugh then it happened he blew out 2 disks in his neck lol and boy he was miserable only then did he understand the pains and depression associated with my injury lol
Hoping evryone has at least 1 pain free day
Rob
Hoping evryone has at least 1 pain free day
Rob
QOD
01-16-2004, 02:23 PM
You're right... ppl don't understand. My GP being one of them.
Yes I'm young... 29... but it doesn't mean I cannot feel debilitating pain to the point where even sitting here makes me want to cry. I have 2 kids under the age of 9 who I can't go running with, and ppl assume its laziness that keeps me housebound and unemployed. If pain meds were miraculous and could eradicate the pain totally, I'd go back to work, run laps round the kids, and finally feel I have a life...
It's easy for pain free ppl to not understand what its like to wake, sleep, and live in pain... It's too bad that even with yrs of living with their perceptions they still bother us. Drives me batty to hear 'how can you be in pain, when you do nothing all day.' *shakes head*
I'm not sure what the point to this ramble was... forgive my rant...
Here's to a pain free future for all of us (utopia I know).
Yes I'm young... 29... but it doesn't mean I cannot feel debilitating pain to the point where even sitting here makes me want to cry. I have 2 kids under the age of 9 who I can't go running with, and ppl assume its laziness that keeps me housebound and unemployed. If pain meds were miraculous and could eradicate the pain totally, I'd go back to work, run laps round the kids, and finally feel I have a life...
It's easy for pain free ppl to not understand what its like to wake, sleep, and live in pain... It's too bad that even with yrs of living with their perceptions they still bother us. Drives me batty to hear 'how can you be in pain, when you do nothing all day.' *shakes head*
I'm not sure what the point to this ramble was... forgive my rant...
Here's to a pain free future for all of us (utopia I know).
TrampyG
01-16-2004, 05:45 PM
Yep. Get it, got it, hated it, but now I don't even respond. Someone who thinks positive thinking does what oxy does has never been in a lot of pain.
Sorry you get that crap. But there is such a stigma with the meds that it is inescapable.
I think the fact that you were NOT drinking is a sign of legitimacy to your pain. Most abusers (if that was part of his indictment of your situation) don't care about their liver and will drink anyway.
Good luck.
Sorry you get that crap. But there is such a stigma with the meds that it is inescapable.
I think the fact that you were NOT drinking is a sign of legitimacy to your pain. Most abusers (if that was part of his indictment of your situation) don't care about their liver and will drink anyway.
Good luck.
Cloie
01-17-2004, 02:17 PM
I am new to this board, but not new to being in constant pain. I just wanted you and others to know how much it helps to read your posts. It is very helpful to be able to extract empathy from posts of others who know what I'm going through. I have a dislocated C 4, 5 and 6 with bulging resulting in constant neck, shoulder, elbow and arm/hand pains. Just had carpal tunnel surgery on right hand and in therarpy for neck. Also have sporadic fibromyalgia, colitis, esophagitis, arthritis and a few other itises...multi-inflamatory disorder. Even to read that others are on Oxycontin and Neurontin is helpful as docs and family often make me feel guilty for not being drug free. They assume that with a little rest and therapy I should be good as new and able to just suck it up and often derride me for taking pain meds. Docs give me that look like I'm drug seeking or a drug addict when I ask for refills. They keep suggesting excercise and diet will fix all and don't understand that I can't excercise as it makes it worse. I feel so angry and overwhelmed that my body robs me of enjoyment of my life, but so cathartic to read others know what I'm going through. Thanks, Cloie
AJS
01-21-2004, 04:11 PM
I love those out there who sigh and think our pain is all in our head,and that if we would just get out and "exercise" or do more stop using narcotics get off the couch...it will go away.I almost feel guilty for being in pain now cause i feel like i am just an annoyance to even my Dr.People don't understand we don't make this stuff up and we would love to feel pain free every single day.I am having a hard time with finding the right dosages...meds...that work for me because i have very high tolerance to medication i am on 80mgs of oxcontin 3x day right now and it still is not enough to keep me at comfort and i feel guilty for this,does anyone else know what i mean???i feel like people or my Dr think i make it up or just want the drugs,but its not the case:( i wish people would just be respectful to us pain sufferers or just keep their mouths shut.For those who have mean things to say i wish they could go through a day of our pain and see what they have to say then,ofcourse that is not possible but hey i can still dream.Well i am back to the couch because my head is pounding and my body feels like i've just got run over by a truck,grrr
mokita
01-22-2004, 10:48 AM
Hi all.
Just saw this....and am not a bit amazed by it. I think people in chronic pain, at some point or other to varying degrees have ALL dealt w/ insensitive family/friends/coworkers, and sadly, doctors.
I am 13 days out of Nucleoplasty, and have dealt w/ cp for over 3 yrs. My younger sisters are the worst. Esp the youngest. She c/b so derisive, and has had me in tears more than once. I've finally reached my limit. I am going to take my PM Doc's advice, and when asked, say "I hurt a little. But, I'm fine." And leave it at that.
I am on oxycontin 20mg/2x/day; percocet 3x/day; was on flexeril as needed ~ but, @ followup yesterday, doc changed me to Elavil @ night (haven't got it filled yet, am today). I am also going to try Bextra, since they gave me samples. My lil sis has actually asked me to try my oxycontin. I said no, a couple different times. Tried to explain that this is not an 'As Needed' medication, that the doc's office keeps very close control over it, and I only get the script the day before I need to take it in the morning. She does not 'GET' that I would Not be able to get out of bed in the morning w/out it ~ literally. Well, I hobble to take the med...and wait for it to start working. She does not get it, and I've finally realized, she NEVER will w/out experiencing it herself. I don't mean a backache that's cured w/ tylenol.
So ~ I am changing the way our relationship has been. I will no longer tell her of med changes. I will not tell her that, at my appt yesterday, the docs are of the opinion that the nucleoplasty may not have worked. I will say "I'm fine". The end. If she pushes for more information, I may have to tell her to drop it. Yes, it will sting her feelings...but, at this point, my getting well...or getting relief from meds to be able to have Some life, is more important. I'm no good to anyone if I'm depressed....stressed... least of all, myself.
I am mother to a 3 yr old and one who'll be 2 in February. I have enough to deal with w/out adding idiotic questions like "when will you be better?" Gee...don't know. Wish I did!
My advice, take care of you. You know what you have to do to survive in your body ~ nobody else does, no matter how understanding they are. We all have different pain thresholds, just as we all have different fingerprints. What works for one will not work the same for the next person w/ the same injury. That's life. Just like there are people who hurt us ~ that's life, too. What WE do about it and how WE react to it is OUR choice. And, sadly, it's the only thing we really have control over.
There's a letter to People w/out Chronic Pain that was posted somewhere in here. I'll try to find it and bump it up ~ it's really, really good.
Good luck and God Bless.
Karen
Just saw this....and am not a bit amazed by it. I think people in chronic pain, at some point or other to varying degrees have ALL dealt w/ insensitive family/friends/coworkers, and sadly, doctors.
I am 13 days out of Nucleoplasty, and have dealt w/ cp for over 3 yrs. My younger sisters are the worst. Esp the youngest. She c/b so derisive, and has had me in tears more than once. I've finally reached my limit. I am going to take my PM Doc's advice, and when asked, say "I hurt a little. But, I'm fine." And leave it at that.
I am on oxycontin 20mg/2x/day; percocet 3x/day; was on flexeril as needed ~ but, @ followup yesterday, doc changed me to Elavil @ night (haven't got it filled yet, am today). I am also going to try Bextra, since they gave me samples. My lil sis has actually asked me to try my oxycontin. I said no, a couple different times. Tried to explain that this is not an 'As Needed' medication, that the doc's office keeps very close control over it, and I only get the script the day before I need to take it in the morning. She does not 'GET' that I would Not be able to get out of bed in the morning w/out it ~ literally. Well, I hobble to take the med...and wait for it to start working. She does not get it, and I've finally realized, she NEVER will w/out experiencing it herself. I don't mean a backache that's cured w/ tylenol.
So ~ I am changing the way our relationship has been. I will no longer tell her of med changes. I will not tell her that, at my appt yesterday, the docs are of the opinion that the nucleoplasty may not have worked. I will say "I'm fine". The end. If she pushes for more information, I may have to tell her to drop it. Yes, it will sting her feelings...but, at this point, my getting well...or getting relief from meds to be able to have Some life, is more important. I'm no good to anyone if I'm depressed....stressed... least of all, myself.
I am mother to a 3 yr old and one who'll be 2 in February. I have enough to deal with w/out adding idiotic questions like "when will you be better?" Gee...don't know. Wish I did!
My advice, take care of you. You know what you have to do to survive in your body ~ nobody else does, no matter how understanding they are. We all have different pain thresholds, just as we all have different fingerprints. What works for one will not work the same for the next person w/ the same injury. That's life. Just like there are people who hurt us ~ that's life, too. What WE do about it and how WE react to it is OUR choice. And, sadly, it's the only thing we really have control over.
There's a letter to People w/out Chronic Pain that was posted somewhere in here. I'll try to find it and bump it up ~ it's really, really good.
Good luck and God Bless.
Karen
twisten
01-22-2004, 11:42 AM
Hi Mokita. Good to see you back again. I remember the post you mentioned. I'll look for it too and bump it up.
phantom151
01-22-2004, 07:23 PM
I Just wanted to say Your not alone , I an longer talking to the majority of my family due to thier intolerance of my being in chronic constant pain and the need to take pain meds I fought them for years hoping they wouls see how bad I am hurt and Hoping that they will understand but they never did :eek: Phantom
Angel77
01-23-2004, 01:56 AM
It's hard to get addicted to something that doesn't even provide relief...let alone the fact you're not getting warm fuzzies from it.
I am on a high dose of amphetamines to treat my narcolepsy and am constantly being told I'm addicted because I have to take 5 doses a day, when all the narcoleptics they've read about take 1-2 doses. The fact that I can take such a high dose and still take a nap otta tell them something, but this obvious point seems to elude them. If they were on the same dose of dexadrine that I'm on, they'd climb out of their skin.
I also get asked when will I get better. My usual response is when brain transplants become available! They are still positive that the sleep attacks or cataplexy are with in my control. Then they'll see me limping because my hips and back hurt so bad I can hardly keep from bawling. They'll ask the obligatory, "What's wrong?"....not a damn thing!! I'm not jumping into that one!
I don't know the name for it, but I have a ligament laxity problem and shallow hip sockets so it allows for my hip to partially dislocate and also ride a bit out of the socket. This gets unbearable at times and during my pregnancy got so bad I was in a wheel chair or had to use my dogs to stand and stabilize. I could not lift my legs upward and once I was settled in bed, could not roll on my own. The only way to describe it was a puzzle that was set on a soft surface and settled. When my hubby would move my you could hear the pop and feel it all the way between my shoulder blades!!
Yet I was constantly asked to watch my sisters baby, run errands, move my mom, and even once put on bed rest was told that I could still watch my niece!! They have no concept. My mom also assumes because she's an addict that I must be as well! An addict doesn't take the meds as prescribed. I'd be out of the dex w/ in a week if that was the case. Most narcotics I can't take for the pain because they have a sedating effect on me and combined with the narcolepsy make it impossible to function. At least with the pain I can be more cognitively aware and mobile if need be.
I wish they could implant some sort of device in people that would give them a good jolt every time they thought or said something that stupid or insensitive!! Then they'd begin to get a bit of a clue what chronic pain is like, since some of them suffer from chronic stupidity!
I am on a high dose of amphetamines to treat my narcolepsy and am constantly being told I'm addicted because I have to take 5 doses a day, when all the narcoleptics they've read about take 1-2 doses. The fact that I can take such a high dose and still take a nap otta tell them something, but this obvious point seems to elude them. If they were on the same dose of dexadrine that I'm on, they'd climb out of their skin.
I also get asked when will I get better. My usual response is when brain transplants become available! They are still positive that the sleep attacks or cataplexy are with in my control. Then they'll see me limping because my hips and back hurt so bad I can hardly keep from bawling. They'll ask the obligatory, "What's wrong?"....not a damn thing!! I'm not jumping into that one!
I don't know the name for it, but I have a ligament laxity problem and shallow hip sockets so it allows for my hip to partially dislocate and also ride a bit out of the socket. This gets unbearable at times and during my pregnancy got so bad I was in a wheel chair or had to use my dogs to stand and stabilize. I could not lift my legs upward and once I was settled in bed, could not roll on my own. The only way to describe it was a puzzle that was set on a soft surface and settled. When my hubby would move my you could hear the pop and feel it all the way between my shoulder blades!!
Yet I was constantly asked to watch my sisters baby, run errands, move my mom, and even once put on bed rest was told that I could still watch my niece!! They have no concept. My mom also assumes because she's an addict that I must be as well! An addict doesn't take the meds as prescribed. I'd be out of the dex w/ in a week if that was the case. Most narcotics I can't take for the pain because they have a sedating effect on me and combined with the narcolepsy make it impossible to function. At least with the pain I can be more cognitively aware and mobile if need be.
I wish they could implant some sort of device in people that would give them a good jolt every time they thought or said something that stupid or insensitive!! Then they'd begin to get a bit of a clue what chronic pain is like, since some of them suffer from chronic stupidity!
mokita
01-23-2004, 07:24 AM
Hi all!
I just bumped the Letter to People in Chronic Pain up from months ago. It was originally posted by a sweet lady named Baxter ~ but, the orig author is unknown. It really touched me when I read it....I hope it helps somebody here. :angel:
Karen
I just bumped the Letter to People in Chronic Pain up from months ago. It was originally posted by a sweet lady named Baxter ~ but, the orig author is unknown. It really touched me when I read it....I hope it helps somebody here. :angel:
Karen
Mara
01-24-2004, 10:56 PM
We recently had my sister and her husband over for the Holidays. My brother-in-law said, "what youre not drinking again?" I told him no not with the pain meds. He said ya know I dont understand how you can be in so much pain, see a P.M. Doc. and be taking pain meds. all the time. If you think positive you wouldnt be in so much pain. I have had 5 major shoulder operations and 3 herniated disks in my lower back. I get that type of comments alot with people who are fortunate enough to be pain free. With the type of work I do (very physical) I need the medication, Oxycontin, Neurontin. Anybody else get these type of reactions from people. And short of telling them where to go, how do you deal with them.
Don't you just love the holidays? lol. He does not understand, is in the dark and said so. (zzzzz) Consider that people who drink may feel uncomfortable around those who don't and perhaps if he didn’t he would not have said what he did (you know, the depressed CNS, lol). Loose lips - sinking ships.
People like that do not have experience to draw on and clearly don't understand the mechanism of pain. It's pain not obvious to the naked eye and often under rated and misunderstood. A swollen black eye, gaping wound, burn, is not pain that would be misinterpreted.
One way to deal with it is to not hold the naivete or ignorance against him, he does not know any better and does not mean to offend (they never do lol). People see a person with MS stumble and waver and draw the wrong conclusion that the person is drunk, when it is from the MS that causes the imbalance. Imagine that...just terrible. Pain ages a person beyond their years and many are infants in this regard. Those who make statements like that don't realize what their remarks imply. Laugh and say, when you're 90 and moaning about your pains, remind me to tell you to think positively lol.
Another is to give him an example by asking him to recall the most physically painful event he experienced & tell him to imagine that pain to be a constant in his life. Explain that treatment takes the edge off but is not a cure. There is no quick fix, magic potion or psychic guru that can make it disappear.
Another thing that happens is if you're not flat on your back-out of commision, still working, still moving around, still entertaining - they don't see the disability because they see functioning ability, so they may not take it as seriously as perhaps they should. Sometimes doctors don't understand pain. It's relative.
Don't you just love the holidays? lol. He does not understand, is in the dark and said so. (zzzzz) Consider that people who drink may feel uncomfortable around those who don't and perhaps if he didn’t he would not have said what he did (you know, the depressed CNS, lol). Loose lips - sinking ships.
People like that do not have experience to draw on and clearly don't understand the mechanism of pain. It's pain not obvious to the naked eye and often under rated and misunderstood. A swollen black eye, gaping wound, burn, is not pain that would be misinterpreted.
One way to deal with it is to not hold the naivete or ignorance against him, he does not know any better and does not mean to offend (they never do lol). People see a person with MS stumble and waver and draw the wrong conclusion that the person is drunk, when it is from the MS that causes the imbalance. Imagine that...just terrible. Pain ages a person beyond their years and many are infants in this regard. Those who make statements like that don't realize what their remarks imply. Laugh and say, when you're 90 and moaning about your pains, remind me to tell you to think positively lol.
Another is to give him an example by asking him to recall the most physically painful event he experienced & tell him to imagine that pain to be a constant in his life. Explain that treatment takes the edge off but is not a cure. There is no quick fix, magic potion or psychic guru that can make it disappear.
Another thing that happens is if you're not flat on your back-out of commision, still working, still moving around, still entertaining - they don't see the disability because they see functioning ability, so they may not take it as seriously as perhaps they should. Sometimes doctors don't understand pain. It's relative.
mokita
01-25-2004, 08:56 AM
Gemi ~
I agree w/ many of your comments, well said ~....and see My life peeking @ me through them! For instance:
Consider that people who drink may feel uncomfortable around those who don't and perhaps if he didn’t he would not have said what he did (you know, the depressed CNS, lol). Loose lips - sinking ships.
My little sister seems to hurt me the worst when she's been drinking! I can ALWAYS tell...she's over-animated, w/ just a hint of slur ~ and, ofcourse, the biting remarks.
People like that do not have experience to draw on and clearly don't understand the mechanism of pain. It's pain not obvious to the naked eye and often under rated and misunderstood. A swollen black eye, gaping wound, burn, is not pain that would be misinterpreted.
Words spoken differently, but basically what my PM Doc told me. They Can't see it ~ they don't understand.
One way to deal with it is to not hold the naivete or ignorance against him, he does not know any better and does not mean to offend (they never do lol). Those who make statements like that don't realize what their remarks imply.
This is the Most important comment, IMO - for MY life...as I have finally realized it is the Only way I can prevent myself from being "emotionally beat up" over and over again. That I must be more compassionate, understanding....when, in reality ~ if others were just a tiny bit more understanding...I w/b thrilled!
Another is to give him an example by asking him to recall the most physically painful event he experienced & tell him to imagine that pain to be a constant in his life. Explain that treatment takes the edge off but is not a cure. There is no quick fix, magic potion or psychic guru that can make it disappear.
Unfortunately, if I did this.....I w/b viewed as being 'dramatic' or 'melodramatic' rather than helping them to understand. Hopefully, others will be more successful w/ this approach. Actually, this would work to help friends of mine who WANT to understand, but simply can't. That's the difference between them & my younger sisters. My family does not seem to WANT to 'get it', perhaps because it frightens them? I don't know.
Karen
I agree w/ many of your comments, well said ~....and see My life peeking @ me through them! For instance:
Consider that people who drink may feel uncomfortable around those who don't and perhaps if he didn’t he would not have said what he did (you know, the depressed CNS, lol). Loose lips - sinking ships.
My little sister seems to hurt me the worst when she's been drinking! I can ALWAYS tell...she's over-animated, w/ just a hint of slur ~ and, ofcourse, the biting remarks.
People like that do not have experience to draw on and clearly don't understand the mechanism of pain. It's pain not obvious to the naked eye and often under rated and misunderstood. A swollen black eye, gaping wound, burn, is not pain that would be misinterpreted.
Words spoken differently, but basically what my PM Doc told me. They Can't see it ~ they don't understand.
One way to deal with it is to not hold the naivete or ignorance against him, he does not know any better and does not mean to offend (they never do lol). Those who make statements like that don't realize what their remarks imply.
This is the Most important comment, IMO - for MY life...as I have finally realized it is the Only way I can prevent myself from being "emotionally beat up" over and over again. That I must be more compassionate, understanding....when, in reality ~ if others were just a tiny bit more understanding...I w/b thrilled!
Another is to give him an example by asking him to recall the most physically painful event he experienced & tell him to imagine that pain to be a constant in his life. Explain that treatment takes the edge off but is not a cure. There is no quick fix, magic potion or psychic guru that can make it disappear.
Unfortunately, if I did this.....I w/b viewed as being 'dramatic' or 'melodramatic' rather than helping them to understand. Hopefully, others will be more successful w/ this approach. Actually, this would work to help friends of mine who WANT to understand, but simply can't. That's the difference between them & my younger sisters. My family does not seem to WANT to 'get it', perhaps because it frightens them? I don't know.
Karen
chriztene
01-26-2004, 05:57 AM
I am new to this board, but not new to being in constant pain. I just wanted you and others to know how much it helps to read your posts. It is very helpful to be able to extract empathy from posts of others who know what I'm going through. I have a dislocated C 4, 5 and 6 with bulging resulting in constant neck, shoulder, elbow and arm/hand pains. Just had carpal tunnel surgery on right hand and in therarpy for neck. Also have sporadic fibromyalgia, colitis, esophagitis, arthritis and a few other itises...multi-inflamatory disorder. Even to read that others are on Oxycontin and Neurontin is helpful as docs and family often make me feel guilty for not being drug free. They assume that with a little rest and therapy I should be good as new and able to just suck it up and often derride me for taking pain meds. Docs give me that look like I'm drug seeking or a drug addict when I ask for refills. They keep suggesting excercise and diet will fix all and don't understand that I can't excercise as it makes it worse. I feel so angry and overwhelmed that my body robs me of enjoyment of my life, but so cathartic to read others know what I'm going through. Thanks, Cloie
Cloie,
I know exactly what you are saying. This board has saved me along with validating the issues which arise with chronic pain. Unfortunately, others cannot understand what us CPR's go through. I have gone through everything you mentioned in your post.
What I have found while reading others posts, is the wealth of information which can be found here at healthboards. I have learned so many things since finding this board from the wonderful posters.
I don't know how others feel, but, I am finding it harder and harder to even mention I am on pain medication. Sadly, there seems like there is such a stigma attached to those of us who need/take pain medication.
Thankfully, I have a pain management doctor who is knowledgeable, compassionate, and understanding of my pain issues. Knowledge is power. It's like walking into a different world when I have my doctor appointments. Prior to being referred to my PM doctor, I felt as you did regarding some people/nurses looking at you suspiciously.
What I have learned since seeing my PM doctor, is those whom aren't educated regarding chronic pain are the same people who judge, question and are quick to label us...
Gosh, I do hope someday soon, there will be news stories regarding chronic pain sufferers; as there are negative news associating pain meds with drug addicts, etc.
Warmest Regards,
Chriztene
Cloie,
I know exactly what you are saying. This board has saved me along with validating the issues which arise with chronic pain. Unfortunately, others cannot understand what us CPR's go through. I have gone through everything you mentioned in your post.
What I have found while reading others posts, is the wealth of information which can be found here at healthboards. I have learned so many things since finding this board from the wonderful posters.
I don't know how others feel, but, I am finding it harder and harder to even mention I am on pain medication. Sadly, there seems like there is such a stigma attached to those of us who need/take pain medication.
Thankfully, I have a pain management doctor who is knowledgeable, compassionate, and understanding of my pain issues. Knowledge is power. It's like walking into a different world when I have my doctor appointments. Prior to being referred to my PM doctor, I felt as you did regarding some people/nurses looking at you suspiciously.
What I have learned since seeing my PM doctor, is those whom aren't educated regarding chronic pain are the same people who judge, question and are quick to label us...
Gosh, I do hope someday soon, there will be news stories regarding chronic pain sufferers; as there are negative news associating pain meds with drug addicts, etc.
Warmest Regards,
Chriztene
Angel77
01-26-2004, 11:17 AM
Another concern about telling people you're on meds is that some are desirable to others and put you at risk of theft. I have to be careful that few people know I'm on dexadrine for narcolepsy because it's a schedule II narcotic and if someone steels from me I also run the risk of not having my doc trust me because I'm sure a lot of people "lose" prescriptions or they are magically stolen.
I take Lortab for the pain, but it just dulls it a bit. My hips ache so bad at night I can hardly move. I had a lot of relief by doing structural integration (a type of massage, hurts like he** at the moment but worth it). It rips the muscles in a certain order. It re-aligned my body....my muscles had attatched funny to my bones because they were trying to make up for my ligaments not working....the end result was my bottom half pointed to the left, while my top half, slightly right. My hips were the worst and I thought I was going to die when she got into them. But after 4mos I was pain free for the first time...then I got pregnant and the hormones made it all go back out of shape. Saving up to do it again.
Just be careful for those of you considering massage therapy. Some conditions are worsened by deep tissue massage. You need a therapist who's knowledgeable about the body mechanics and disorders as well as listens to the body. It hurts when done right, can you imagine how bad it would hurt if they pushed the body further than it was able or ready for?
It should be mandatory that everyone who makes a snide comment or is totally ignorant to what they can't see, have to spend a week in a body that doesn't want to work or hurts to do anything. They would quickly learn to either be compassionate or shut the heck up. Would be nice for a change.
I take Lortab for the pain, but it just dulls it a bit. My hips ache so bad at night I can hardly move. I had a lot of relief by doing structural integration (a type of massage, hurts like he** at the moment but worth it). It rips the muscles in a certain order. It re-aligned my body....my muscles had attatched funny to my bones because they were trying to make up for my ligaments not working....the end result was my bottom half pointed to the left, while my top half, slightly right. My hips were the worst and I thought I was going to die when she got into them. But after 4mos I was pain free for the first time...then I got pregnant and the hormones made it all go back out of shape. Saving up to do it again.
Just be careful for those of you considering massage therapy. Some conditions are worsened by deep tissue massage. You need a therapist who's knowledgeable about the body mechanics and disorders as well as listens to the body. It hurts when done right, can you imagine how bad it would hurt if they pushed the body further than it was able or ready for?
It should be mandatory that everyone who makes a snide comment or is totally ignorant to what they can't see, have to spend a week in a body that doesn't want to work or hurts to do anything. They would quickly learn to either be compassionate or shut the heck up. Would be nice for a change.
Cloie
02-07-2004, 11:14 PM
Dear Chriz and Angel,
It's a relief coming in here and being validated. I think that others have to invalidate our pain because it's too awful for them to even imagine being in chronic, severe pain. Much like when kids are very mean to another kid who's disabled or different...they have to reject us or else they'd have to face their fear of it possibly happening to them. People like to believe they can control everything in their lives and the thought of not being able to control awful pain is intolerable for many people...so, they prefer to believe that we could control it if we really wanted to....we're just weak, in their minds.
This is even the attitude I got from one of my doctors (ex-doctor now). He acted as if I was overexaggerating for sympathy. When I told him excercise made the pain worse and anti-inflammatories made my gastritis unbearable, he said, "Gee, you have an excuse for everything, don't you? Well, I think you're making a mountain out of a mole hill."
I'm going back to my previous endo doc. Even though he's an hour away and the wait is more than an hour, each visit, he's worth the wait, because he has respect for his patients and doesn't dismiss me as a hystrionic female.
I just started Ultram yesterday instead of taking Oxycodone. Anyone have any experience with it? So far, I'm really dizzy and have very dry throat. Tired but also energy to burn being off the oxy. Reduces pain about 50 to 60%. Are claims it's not as addictive true? Any info appreciated. Thanks, hugs, Cloie
It's a relief coming in here and being validated. I think that others have to invalidate our pain because it's too awful for them to even imagine being in chronic, severe pain. Much like when kids are very mean to another kid who's disabled or different...they have to reject us or else they'd have to face their fear of it possibly happening to them. People like to believe they can control everything in their lives and the thought of not being able to control awful pain is intolerable for many people...so, they prefer to believe that we could control it if we really wanted to....we're just weak, in their minds.
This is even the attitude I got from one of my doctors (ex-doctor now). He acted as if I was overexaggerating for sympathy. When I told him excercise made the pain worse and anti-inflammatories made my gastritis unbearable, he said, "Gee, you have an excuse for everything, don't you? Well, I think you're making a mountain out of a mole hill."
I'm going back to my previous endo doc. Even though he's an hour away and the wait is more than an hour, each visit, he's worth the wait, because he has respect for his patients and doesn't dismiss me as a hystrionic female.
I just started Ultram yesterday instead of taking Oxycodone. Anyone have any experience with it? So far, I'm really dizzy and have very dry throat. Tired but also energy to burn being off the oxy. Reduces pain about 50 to 60%. Are claims it's not as addictive true? Any info appreciated. Thanks, hugs, Cloie