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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board


Reflex Sympathetic Dystrophy (RSD) (CRPS) Board Index


Hello ihtgdfp; are you there? Please please understand that there are many of us out here that know EXACTLY how you feel; the anger, frustration, feeling like no one cares or will acknowledge your pain any longer. Money doesn't always make the dr's take your word for the pain you feel. My rsd started with a slight sprain from a work injury...I know u're going to think; oh, yeah sure hers is paid for so she's getting or got a doc that understands & believes the kind of pain we're experiencing. Sorry, NOT! I've been with the same rsd pm dr from the start; had the blocks, oxycotin, methadone (which I end up having to have a gall bladder surgery but no no it had nothing to do with the methadone), now have a spinal column stimulator that's been moved twice not counting the lead wires they moved a couple of times "trying to get the stimulation to my elbow", well, let me tell you; it's sucks here too. I really wonder where all these people get the nice understanding dr's. I get to see mine once every 3 months; in that time if your pain becomes unbearable & you call the office, too bad you have an appointment in 2 months. Last time I seen him I was having a "good couple of days"; kinda looked like my old self...the antidepressants & new sleeping pills had kicked in & I felt more like my old self so what's the pm dr do & say? 1) wasn't much interested in what I was saying about the pain in my neck from where the paddles from the spinal column stimulator has finally ended up at & by the way, has gotten to the point where I walk around (when I turn it on) looking a f'n turtle cause my head's always trying to get away from the pain & pressure that's going on where they did the partial lamenectomy to get the f'n paddles in so I'd get the stimulation to my elbow; yes, by george i've got stimulation way down to my hand that hurts along with my shoulder that just kills me BUT now the burning in my elbow is breaking thru their wonderful SCS junk thing. So i go to the pm dr. He sent me for a EMT? where they check for carpal tunnel; now remenber i'm in this 3 and half yrs. now AND guess what? no carpal tunnel; he just sends in a request yet again (4th time this yr. been turned down every time because i just sit down & cry; i can't drive 70 miles one way to the psych drs one day & drive that far the next; I'm going to kill someone on the road; have had 2 accidents in the past 3 wks. both not my fault but may not have happend at all if i had better reaction time from either my right hand has constant spasms or the meds. No i'm not on oxycotin or methadone (the drs drugs of choice here) took myself off them; one made me nutteier than i already am & the other made me sick so its now Vicodin; neurontin for the burning; zanaflex for muscle spasms (& this dr said if it were he - he wouldn't take these things. WHAT???) now psych meds because i'm in the frame of mind that you are now...what i'm trying to say is i very much understand your frustration believe or not...my injury leading to the rsd is pd for yes but it's just made me feel like a guineapig. My body looks like a stinkin road map where they've moved something from one place to another and oh yeah; did i say that the burning in my elbow burns thru the stimulation now? and guess what? The testing for carpal turnnel or the upper arm whatever didn't show anything so he's sent in a request for you'll like this...vocational reabilitation for the 4th time. Makes it sound like i'm a flake doesn't it? i'm not in awful awful pain on a daily basis now; the psych drs have tripled my sleeping pill so maybe i'll sleep thru the pain that wakes me every single night? Yeah; I can commiserate. Don't consider killing yourself...consider moving to another state...keep looking for a doctor who understands rsd; apparently from other people who post that they are out there. I'm stuck with this dr. unless i can get him to give me a referral; isn't that nice? something makes me think just how pissed this will make him when i see him in what, a month?!!! yeah; i'm thinking of giving up too & i've been extremely nieve? can't spell...to believe in the drs; today i'm sitting here willing you to think think think where might you know someone else someplace else that you can go & find a dr to help you. I know i feel just like giving up. and i've had all the treatments this dr. is going to give me; he just keeps shoving back to voc. reabilitation to be rid of me i think, to cover his own hynie whatever but i know i think alot about the railroad tracks in my back yard. busy tracks. be real easy to just throw myself in front of it...be my luck i'd just get severly injured & be in worse shape yet tho it doesn't feel like it could get any :angel:worse. started in my elbow; makes both hands burn & hurt (not according to the dr.of course) up my arm to my shoulder on the inside of my arm onup to my shoulder & now my collarbone hurts like hell. no, no, rsd doesn't move around...per the dr. I can feel your pain so so well. But ending the pain with suicide isn't the answer. I know that & so do you. just keep talking to doctors, keep at the social security office for help...just don't give up. just don't give up. if anything in the world helps you at all...know that the 111 people that read your thread are thinkin; we all know how u feel. I hate the pain, the control i'm losin in my hand..taking me hrs. to type this; I hate that i really do need the man that lives here & i've lost my independence; i hate it i hate it i hate it. But now it's drink my coffee; take what meds i have; know that Mon. i've got to deal with issues again but i'm going to pray for you & me, put on my big girl panties & get on with it because...i'll be damned if THEY will let it get me thinkin of lying on that rroad track. Thinkin of You my friend. :angel:
[QUOTE=scioladyohio;4302789]Hello ihtgdfp; are you there? Please please understand that there are many of us out here that know EXACTLY how you feel; the anger, frustration, feeling like no one cares or will acknowledge your pain any longer. Money doesn't always make the dr's take your word for the pain you feel. My rsd started with a slight sprain from a work injury...I know u're going to think; oh, yeah sure hers is paid for so she's getting or got a doc that understands & believes the kind of pain we're experiencing. Sorry, NOT! I've been with the same rsd pm dr from the start; had the blocks, oxycotin, methadone (which I end up having to have a gall bladder surgery but no no it had nothing to do with the methadone), now have a spinal column stimulator that's been moved twice not counting the lead wires they moved a couple of times "trying to get the stimulation to my elbow", well, let me tell you; it's sucks here too. I really wonder where all these people get the nice understanding dr's. I get to see mine once every 3 months; in that time if your pain becomes unbearable & you call the office, too bad you have an appointment in 2 months. Last time I seen him I was having a "good couple of days"; kinda looked like my old self...the antidepressants & new sleeping pills had kicked in & I felt more like my old self so what's the pm dr do & say? 1) wasn't much interested in what I was saying about the pain in my neck from where the paddles from the spinal column stimulator has finally ended up at & by the way, has gotten to the point where I walk around (when I turn it on) looking a f'n turtle cause my head's always trying to get away from the pain & pressure that's going on where they did the partial lamenectomy to get the f'n paddles in so I'd get the stimulation to my elbow; yes, by george i've got stimulation way down to my hand that hurts along with my shoulder that just kills me BUT now the burning in my elbow is breaking thru their wonderful SCS junk thing. So i go to the pm dr. He sent me for a EMT? where they check for carpal tunnel; now remenber i'm in this 3 and half yrs. now AND guess what? no carpal tunnel; he just sends in a request yet again (4th time this yr. been turned down every time because i just sit down & cry; i can't drive 70 miles one way to the psych drs one day & drive that far the next; I'm going to kill someone on the road; have had 2 accidents in the past 3 wks. both not my fault but may not have happend at all if i had better reaction time from either my right hand has constant spasms or the meds. No i'm not on oxycotin or methadone (the drs drugs of choice here) took myself off them; one made me nutteier than i already am & the other made me sick so its now Vicodin; neurontin for the burning; zanaflex for muscle spasms (& this dr said if it were he - he wouldn't take these things. WHAT???) now psych meds because i'm in the frame of mind that you are now...what i'm trying to say is i very much understand your frustration believe or not...my injury leading to the rsd is pd for yes but it's just made me feel like a guineapig. My body looks like a stinkin road map where they've moved something from one place to another and oh yeah; did i say that the burning in my elbow burns thru the stimulation now? and guess what? The testing for carpal turnnel or the upper arm whatever didn't show anything so he's sent in a request for you'll like this...vocational reabilitation for the 4th time. Makes it sound like i'm a flake doesn't it? i'm not in awful awful pain on a daily basis now; the psych drs have tripled my sleeping pill so maybe i'll sleep thru the pain that wakes me every single night? Yeah; I can commiserate. Don't consider killing yourself...consider moving to another state...keep looking for a doctor who understands rsd; apparently from other people who post that they are out there. I'm stuck with this dr. unless i can get him to give me a referral; isn't that nice? something makes me think just how pissed this will make him when i see him in what, a month?!!! yeah; i'm thinking of giving up too & i've been extremely nieve? can't spell...to believe in the drs; today i'm sitting here willing you to think think think where might you know someone else someplace else that you can go & find a dr to help you. I know i feel just like giving up. and i've had all the treatments this dr. is going to give me; he just keeps shoving back to voc. reabilitation to be rid of me i think, to cover his own hynie whatever but i know i think alot about the railroad tracks in my back yard. busy tracks. be real easy to just throw myself in front of it...be my luck i'd just get severly injured & be in worse shape yet tho it doesn't feel like it could get any :angel:worse. started in my elbow; makes both hands burn & hurt (not according to the dr.of course) up my arm to my shoulder on the inside of my arm onup to my shoulder & now my collarbone hurts like hell. no, no, rsd doesn't move around...per the dr. I can feel your pain so so well. But ending the pain with suicide isn't the answer. I know that & so do you. just keep talking to doctors, keep at the social security office for help...just don't give up. just don't give up. if anything in the world helps you at all...know that the 111 people that read your thread are thinkin; we all know how u feel. I hate the pain, the control i'm losin in my hand..taking me hrs. to type this; I hate that i really do need the man that lives here & i've lost my independence; i hate it i hate it i hate it. But now it's drink my coffee; take what meds i have; know that Mon. i've got to deal with issues again but i'm going to pray for you & me, put on my big girl panties & get on with it because...i'll be damned if THEY will let it get me thinkin of lying on that rroad track. Thinkin of You my friend. :angel:[/QUOTE]
Hello,
Great advice. To the one who started the post, I hope you are having at least a few moments of relief now and then. I hope that you have had some better luck recently. I'm new to rsd due to 2 car accidents 1 guy ran a red light and tboned me, the 2nd I was passenger and got hit directly other car going 60 mph. Both accidents w/in 4months of eachother. Have been to 30 drs or so. Now looking for rsd specialist cuz right now I'm not getting any advice, what to do, not to do, what to expect tomorrow-for rest of my life. I'm going off the crazy meds my old pm dr put me on-forced me on afterd 3 months of battling. Took leave from work cuz pain was getting worse and worse. Thought id be back in 3 months, been out 8 months now. Am terrified of losing my job, my insurance, in incredible debt, used to have plenty of money to live on. Been trying to be positive and do what I can to to get better but nothing helps. Every movement causes pain. Haven't slept in 10 days btwn being woken up by pain or the intense sweating. I was in acceptance phase for 3 days or so, now I'm just angry, upset, terrified. I used to play on multiple soccer teams, work 70 hrs/wk & love it, be active in every way possible, now cuz I had bad luck in vehicles I'm screwed for life. Now I'm in the dehydration stage, I can't stop crying. Noone understands the pain. I'm tired of the pills. I actually asked my dr to cut my arm off on fri trying to show him how much pain I'm really in, he made a joke that the saw wasn't working and dismissed me w/more pills. I can barely get myself dressed, can't sit, stand, sleep, move and have been told I'm crazy, faking it, all in my head. O and the 2 tears & huge chip in my shoulder are just there. Don't need fixing. Just there. That's all I get even when its evident they are there, there is a cyst growing out of 1 of them. I have been blacking out during physical therapy lately because the pain is so bad but I know I have to keep my body moving so my muscles don't atrophy, but the pain is so bad I cannot even face life. I was doing great at work about to be promoted and now I am useless. Don't even know if ill ever work again and I'm a workaholic I enjoy it not to mention need to work since all my drs bills are getting sent to collection as I can't think straight to stay on top of them.

I don't know what to do. I keep trying to fight, look up new drs coming up empty and more in debt. I have considered the original topic and "solution" of this post, however that is not a solution. You have to be your own advocate. Drs think they know something. Think they understand, but unless someone is actually going through it, feeling the unbearable pain all day every day watching your previously productive and fulfilling life take a complete 180. The only thing that I can keep doing is keep trying to find someone to help, and keep faith and hope that the light at the end of the tunnel will evenually show its rays. The pain is unbearable, debilitating, terrifying, frustrating, so many things, but taking your life is not the answer. My family tries to be here for me but they don't know what to do cuz its too hard for them to understand. I truly hope that you and everyone dealing with this has at least one person to go to. Cuz I have family, friends& church and its still unbearable. So find someone you can confide in, who will take your complaints no matter what, who will support you. In this battle, support from a friend, family member, anyone is much better that no support at all. And of course you have the support of us all on here.

I have 2 cousins w/cystic fibrosis. Lifespan used to be 20y/o and less. My cousin lived 10 yrs past that on horrible meds and 3-5x daily treatments, but she was able to find a job she could do and love working for the red cross, and she fought each and every day. There were many close calls, but even the night she passd, she took the energy to flash a slight smile. She fought to the end, lived a fulfilling life till 30 knowing her life would end early, but she never gave up. Her sister is in the same position doing the same exact thing. And they have known they r going to have this prob their entire life basically from birth, but they never have given up. They are my heros for that and in moments like this I think of my cousin jenny and pray she can give me some courage to keep fighting like she did.

I hope everyone has someone they can turn to, I hope we can all support one another.

I apologize I got off topic, just felt it fit.

Giving you all best wishes,

K





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